Cindy, a passionate advocate, has expressed her unwavering commitment to being part of the solution by actively participating in clinical trials. Cindy’s dedication is truly remarkable. She and her husband are willing to go above and beyond, even screening for the same trial multiple times. Not only does Cindy’s involvement contribute to the advancement of research, but she also provides valuable feedback to enhance the trial experience for others. 

“My mother was diagnosed with Alzheimer’s, and now I have it. I joined these clinical trials to contribute to the efforts of finding the cure for future generations, in hopes that it will help researchers understand why/how the disease manifests and ultimately find a cure. I’m making the best of a “bad” situation by taking proactive steps that help Researchers uncover the cause/find preventive measures that will minimize/irradicate this disease. I consider this the “footprint” for my purpose on this planet.”

Karen has consistently demonstrated her dedication to research. Her positive mindset and unwavering support not only uplift her husband but also serve as a beacon of hope for others affected by this debilitating disease. She possesses a unique ability to communicate with her husband, emphasizing the importance of his contribution to the fight against Alzheimer’s.

“We joined this study hoping that my husband's Alzheimer's would slow down. We also felt that our children and grandchildren might benefit from the findings of the study. Further we felt it essential to assist in furthering the knowledge base to some day be able to reverse the effects of Alzheimer's.”

Monique has been a champion for Alzheimer’s disease research for the past 15 years. She has dedicated her life to caring for her father and diligently sought to pursue his wish to contribute to scientific advances toward new treatments and, one day, a cure. Her father’s participation in a study involving surgery and a 1-week hospital stay and as the first trial participant in a different study highlights her dedication to research that goes beyond the typical demands of a study partner in a clinical trial.

“The most rewarding aspect of being involved in clinical trials is hope. Knowing that our participation in the clinical trials is contributing to research advancements and potentially benefiting future generations.”

Esther has been outstanding in perseverance, showing great effort and commitment in her participation in clinical trials. She persevered when faced with adversity and is a great example in her effort to find treatments for AD. Maintaining her positive attitude and friendly demeanor throughout, she is a pleasure to work with.

“Knowing that I am doing everything I can to potentially find a cure, and future generations do not have to stress about this terrible disease is rewarding.”

Dr. Head is a treasured community partner, who as a host on North Nashville TV, raises awareness for issues affecting the African American community in Nashville. Dr. Head indicated that he was interested in participating in a study and documented the process to raise awareness for Alzheimer’s Disease in the African American community to highlight his positive first experience in research.  He provides a platform to talk about the work, shares what is being done to fight this disease, and disseminates the information to the people that need to hear it most.

“Having been an athlete, coach, instructor and administrator on the collegiate level almost my entire career, it tells me that to stay relevant you must stay in the game. The game of life is only rewarding when you are able to help someone else, interact positively with family, friends and the community. My ‘organization’ NorthNashvilleTV.com is a website that has as one of its goals, to assist those in elder care facilities with issues which plague them. We have programming that targets those individuals which include podcasts that provide exercise routines for those who are physically challenged, a program that deals with healing trauma that life has inflicted on them and my podcast "Let's Talk About It" that delves into just about anything that affects the community we serve.”

Patricia is an extraordinary advocate for brain health and research participation in our community. Patricia is such an advocate for all she meets whether, through faith-based organizations or community support groups. She truly reaches people where they are and encourages them to advocate for themselves as well. She shares a heartfelt journey with many and does so with such joy and compassion.
Patricia is so inspired to participate in clinical research, she screened five separate times to participate in a clinical trial. Once enrolled, she attends each monthly appointment diligently and with enthusiasm. She often speaks to others, either one-on-one or in group settings, to advocate for brain health and share her insights into participating in clinical research. She encourages all to be involved!

“The most rewarding part of participating in this trial is feeling like myself longer. The trial has helped me continue to live a wonderful life. I'm just so happy to be in it. I love working with the staff; everyone is so kind. Meeting everyone here has been so great. Participating in the trial keeps me interested in what is going on in the industry. I'm praying that the outcome will be for so many other than myself."

Carolyn goes above and beyond the basic requirements of every study she participates in. Whether she is speaking on local interviews, sharing her story in the community, or encouraging people to volunteer, her passion to raise awareness for Alzheimer’s disease is unmatched. The primary caregiver for her son, Carolyn still makes the time to volunteer and brings joy to everyone who she meets.

“There are so many wonderful aspects of being a part of clinical trials, but for me, the best is playing a part on a vastly important study that will positively affect others. After my mother died of Alzheimer’s, I scheduled cognitive testing for myself at Vanderbilt. I was then informed about volunteer opportunities for trial studies. I volunteered for any and every trail offered. It means the world to me to contribute to this research; it’s a way to love my family.”

Mia is a participant in a unique study for people with down syndrome, since adults living with down syndrome are at high risk for Alzheimer’s disease and are an important population to consider as therapies are developed in Alzheimer’s research. Without participants like Mia, understanding this population and developing therapies with their unique genetic characteristics in mind, would not be possible. Mia and her mother have an unprecedented commitment to research, traveling from Atlanta, Georgia to Nashville to volunteer. Mia has been a fearless and courageous volunteer as well, handling everything in stride, and completing all activities with a smile on her face.

Mia’s mom said, “Knowing we are contributing to the knowledge base that hopefully results in good treatment solutions for people with Down syndrome. I asked Mia about what is most rewarding and she said, “Staying in the hotel and eating out, riding the bus on campus, going around in a wheelchair and answering the questions. And time with Mom.”

Mia Nobby, Champion Award, Cornerstone Award, Catalyst AwardVanderbilt Center for Cognitive Medicine, Nashville, TNMia is a participant in a unique study for people with down syndrome, since adults living with down syndrome are at high risk for Alzheimer’s disease and are an important population to consider as therapies are developed in Alzheimer’s research. Without participants like Mia, understanding this population and developing therapies with their unique genetic characteristics in mind, would not be possible. Mia and her mother have an unprecedented commitment to research, traveling from Atlanta, Georgia to Nashville to volunteer. Mia has been a fearless and courageous volunteer as well, handling everything in stride, and completing all activities with a smile on her face.Mia’s mom said, “Knowing we are contributing to the knowledge base that hopefully results in good treatment solutions for people with Down syndrome. I asked Mia about what is most rewarding and she said, “Staying in the hotel and eating out, riding the bus on campus, going around in a wheelchair and answering the questions. And time with Mom.”

Kathleen has an optimism and commitment to hard work that inspires others. As a participant in a demanding study, she was nothing but kind and exuded positive energy which was so meaningful to the team working with her.  She has battled breast cancer, showing her true strength and perseverance and even after that journey, she chose to give back her time to volunteer for others. It is a joy to know Kathleen!

"It is rewarding to have a meaningful way to contribute toward ongoing research towards Alzheimer’s (which my mom had for 18 years) and for women with breast cancer who have suffered with “chemo brain”. Though I hoped the study would in some way strengthen my brain, I never anticipated the significant improvement I have personally experienced as a result of this study.”

Caroline and Art were married in 2019, and the following year, Art was diagnosed with Alzheimer’s disease, at age 60. As can be imagined, this was a devastating diagnosis, given his young age and their recent marriage. Despite living more than two hours away, Caroline ensured that Art would make it to all his clinical trial visits. She has become an advocate, sharing her story speaking elegantly about their journey through this disease. Caroline has provided interviews, both for print and television, increasing the awareness of young onset Alzheimer’s disease and how to guide someone through the stages of change.

“Participating in clinical trials is important to both of us. They enable us to do all we can to support Art in this journey, while at the same time contributing to the medical knowledge of this disease to support other families in the future. The most rewarding aspect of supporting Art in clinical trials is knowing that we are part of important research. The medical knowledge of this disease has increased greatly in recent years, and it is satisfying to know we are contributing to that knowledge.”

Mary’s dedication to the program has been exemplary, if Mary believes that she is helping future generations, she is game for anything. She has shown her community the importance of volunteerism with a “someone has to this” attitude which she has carried with her through her life.  

In addition to raising two children with a full-time job, Mary prioritized volunteering. She was a board member for 2 residential facilities for individuals with dementia, a tour guide for a local heritage village and at her local hospital. Mary and her husband see participation in clinical trials as an extension of her volunteerism. When asked about the benefits of participating in clinical trials Mary has consistently always answered “to help other people”.  Her kind smile and friendly, welcoming demeanor help to make others new to clinical trials feel like they are in a safe welcoming place.

“I’ve been volunteering in many programs and boards all of my adult life. Volunteering in a clinical trial was simply another meaningful volunteer opportunity. Interestingly, through the Ewart Angus Foundation, I was involved in the establishment of Cedarhurst, on Bayview Avenue in Toronto. This is a specialized home for people with Alzheimer’s. Knowing that I am helping people who develop Alzheimer’s in the future- either by helping to prove the trial drug or by causing the researchers to pursue another remedy is rewarding. Going to such a welcoming, friendly place as the Kawartha Centre. It’s not like a medical appointment; it’s more like a social outing. I know the staff at the Kawartha Centre care about me and my health.”

Judy takes on every aspect of volunteering in her clinical trial with gusto. She walks into the clinic and immediately everyone, staff, other trial participants feel lifted. No one can feel unhappy, stressed or down in her presence. dominant side. Despite health struggles, her attitude remained positive, grateful and she could not wait to get back to the clinic for her research trial.  She brings light to all the other study participants and makes them feel that they are at home. She engages everyone in conversation and makes everyone around her feel special.

”This clinic is special to me, and I feel it is helping me carry on a very normal life, as I am still very active. I do not feel any anxiety, only positive feelings and vibes from staff in my clinic and from my family! All very supportive!”

John enjoyed a career ensuring the protection of historically and environmentally significant land, threatened by urban and industrial development. While retired, he continues to be involved in research involving breeding bird surveys and marsh monitoring, and also is a curler, a reader and an avid cross-country skier, and certified wine judge! He now takes on the role of volunteer after receiving an Alzheimer’s diagnosis in June of 2021.

His kind, knowledgeable and giving nature has spurred him to take his research background and apply it to his current situation. He has a strong passion for science and moving science forward. He had no hesitation about joining a research trial when he received his diagnosis. His quote on the day he was diagnosed and introduced to research was “sign me up”. It did not matter what trial, where there was an open label, or if he received placebo. He just wanted to help.  

“My family had a history of mental confusion in their later years. I wanted to understand my family genetics and potential mental health risks as I aged.  Clinical trials have many benefits.  I personally benefited from the research, while assisting in the development of new medications.”

Anne’s effort to find a cure for Alzheimer’s Disease is evident by the hurdles she has jumped over for her husband to follow through with his research study. They had many obstacles along the way and the research process has not always been easy. Despite all that, she has persevered because this is important to her spouse. Anne is a research hero.

“Initial participation in the clinical trial was for personal reasons. However, being involved in a potential breakthrough to finding an Alzheimer’s cure or improving one's quality of life is very fulfilling, knowing we are involved in offering some hope to future generations, including our children and grandchildren.”

Mike, a curling enthusiast has made time to become a very active member in the volunteer community. He has been involved in Curling for 25 years as a player and organizer including President of the Lakefield Curling Club and currently the Interclub Co-Ordinator for ten curling clubs in the Kawartha region, in addition to being an active recreational golfer, and Executive with the Lakefield United Church Sr. Men’s Club. With his community involvement, he spreads the word to his peers about research opportunities, especially if he is aware that a peer is having some memory issues.

"There were several rewarding aspects including being a member of a research team, sharing like concerns with others, playing some part in citizen science and others. But upon reflection, the greatest reward has been sharing the trials experience with my ‘study” partner, which in my case is my wife. It meant I was not alone; I had a real partner.”

Jim is a helper. He has dedicated his life to helping others, helping the community, and helping his country. If there were more people like Jim, we would have a cure for Alzheimer’s Disease. Jim has never participated in trials to help himself. His purpose has always been for the greater good. He has a love for science, his community and mankind. As a result of these traits, he has given himself fully and completely to assisting in finding a cure for Alzheimer’s Disease. Jim does not believe that contributing to the community, in this case Alzheimer’s research, is a choice but rather a responsibility. He lived his life helping others through serving in the Navy and then working in human resources where he encouraged people to be their best selves and to stand up for those less advantaged

“My participation is my opportunity to contribute to our attempt to limit and control the spread of Alzheimer’s Disease, and the damage it is doing to mankind’s health. We must fully understand the scope of the effects of the disease before we can effectively contain it. It is rewarding to know that we will at some point contain the damage and spread of the disease and my participation is a chance to contribute to the knowledge.”

Ms. Belanger is enthusiastic about attending all events where she can share her experience, passion and belief in the importance of Alzheimer’s research. She independently seeks out opportunities in her community, Shell Point, the largest Continuing Care Retirement Community in the state of FL.  She also is a volunteer at the memory unit at the community (called Connected Living) and participates in memory stimulation activities for the residents. She frequently offers ideas and suggestions for educational programs for the general community, particularly effective when participating in health fairs, where she openly discussed her Alzheimer’s diagnosis, the benefits of clinical research.
 

“I wanted to help find an Alzheimer's cure. Volunteering with NPRC professionals gives me purpose. Engaging in health fairs and communities, demonstrating that early diagnosis can extend living independently , and seeing hope on faces of concerned people after explaining clinical trial benefits is incredibly fulfilling. As a former medical technologist, I recognize the vital role of clinical trials to uncover new medications. Contributing to medical progress and the potential of advancing cutting edge treatments both personally and for others is deeply rewarding."

As a radio host for WSBB, Ammie is connected to many of the small business and areas that work with seniors, and she goes above and beyond to educate others on helping with Alzheimer’s. Ammie works with the businesses in New Smyrna Beach and her voice is powerful as the seniors know of her and her efforts. Ammie has stepped into the ownership role and continues to be a beacon of hope for the community.

“As a caregiver and an employee that has seen first-hand the awful disease, I feel as a radio personality that I am responsible to share this information to the public. Progressive Medical Research is doing an excellent job taking care of their patients and making a difference with their research.”

The strength exemplified by Karen while her spouse’s cognitive function declined was inspiring to site staff and the memory care facility. Despite the participant’s condition, Karen remained positive and reflective of the good times that were spent with the participant. After study visits, Karen would take her husband to see Tennessee State Parks (usually a different one each visit) to maximize their trip to Nashville and to enhance the participant’s experience.  

“My husband was a pastor for over 60 years. Giving up preaching was very hard for him, and supporting him in the clinical trial was a way for me to help him to continue to serve others and help him feel he still had a purpose in life. The most rewarding aspect of supporting my husband in a clinical trial was knowing that I would be helping him have the opportunity to provide information that could lead to the discovery of another medication that could help other people with Alzheimer’s, and possibly other dementias, lead better lives.”

Clifford has become part of the family at Progressive Medical Research. He is very amiable and kind to both coordinators and patients as well. The staff even make a special coffee when he comes in. He wants to find a cure for himself and the future generation after him. He is the perfect patient as he makes the day a better place with his great demeanor. He offers hugs and they are well received.

“The most rewarding part of the study is that my memory has not gotten worse. I like the people at the site. The team here has helped with that and encourage me to stay calm and not get upset and make it worse. I was nervous at first but the team here made me feel very comfortable. It is such an honor to be recognized by the administrators and doctors here.”

Larry is a wonderful volunteer who has dove in, and is willing to share his experience. He event presents at lunch and learns which have been excellent! The team at Progressive Medical Research enjoys working with him and is grateful for his time and dedication to volunteerism.

“The most rewarding part of being in a study is that, whatever the coordinator, and doctors promise at PMR is true. They are very good at explaining the process and what to expect.”

John has been relentless in his endeavor to further Alzheimer’s research. As a scientist, he has a deep understanding of the need to participate in research to advance science. Since the time of diagnosis, he has wanted to be involved, and will even travel long distances to ensure he helps further research. He always has a smile on his face and describes the experience of participating as meaningful. He is a research hero whose efforts have been unwavering and the team at Kawartha Centre is grateful for him.

“The trial showed me a way I could participate with others in a search for a cure. Being involved in a scientific trial has enriched my life and the lives of those around me.”

Steve’s commitment and dedication to Joan’s well-being have been truly remarkable. He attends every visit and procedure, ensuring thorough support and provides thorough communication at each visit.  Steve’s passion for staying informed about Alzheimer’s research is commendable. As the trial nears its end, he is eager to continue contributing to the research facility.  

“Joan couldn’t have participated without me for a number of reasons. She has never demanded anything from me in our 12 years together! We have taken care of each other in so many ways. To me, it was an adventure and a way for me to learn about myself and the disease, to be happy in times of misery, and to be unselfish in my loves most difficult times. The most rewarding part has been to watch a persons bravery, to support her when things got sad, and to laugh and cry together.”

Joan has been very engaged and dedicated to her participation in a 3.5-year interventional clinical trial for the treatment of Alzheimer’s Disease. She was the first participant enrolled in this trial, and she has consistently demonstrated a strong commitment to doing whatever is needed of her.

Most of all, she does it all with a smile and a great sense of humor! As her participation in the trial is coming to an end, she is always asking the team what she can do next or how she can keep coming back to the clinic to continue her participation with the facility and the research activities involved. It is clear to us that she has no intention of slowing down now in her commitment to fighting this disease.

“The most rewarding aspect is that I’m still helping others! I was so grateful to be part of the trial.”

Mary is an extraordinary advocate for education and awareness. A “giver,” Mary was a nurse who gave back to the community through education, and even visited Nigeria to give back. Mary is a dedicated member of three on-line support groups, sharing how these forums have helped her as she lives alone and is learning to overcome and manage new challenges to help with everyday living. This year, Mary will present on the topic of dementia/Alzheimer’s in a virtual setting to educate to a group of medical students and nurses from Nigeria. Her grit and determination are unmatched, and she is a true advocate in raising awareness for Alzheimer’s/ Dementia with a community that is lacking information. 

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"The most rewarding aspect of being in a trial is the hope that it will slow progression for me, as well as helping future research regarding dementia related illness. As a science nerd, I still enjoy reading scientific papers. I believe any challenge there may be is worth the challenge, as education is needed in the community and within the medical providers and staff. A goal I have is to teach nurses about dementia, as nurses have no idea what I go through on a daily basis. I surely did not. I hope to reach this goal before I can no longer. I am presently working on a presentation to nurses in Nigeria, as it is a disease that no one talks about, according to those Nigerian natives who now live in the U.S.”

Cheri was a loving and dedicated caregiver for her husband until he passed away, and her dedication to his care was inspirational.  Cheri was always willing to share her story, and raise awareness for research. Cheri became so close with our team that we feel like family. Her family joins us in the yearly  Alzheimer’s Walk, and she has invited the Progressive Medical Research team to join her at the Nascar Association’s Thanksgiving endeavor at Daytona Beach, since Nascar is a big part of her life. We admire Cheri, and are grateful she and her husband became an extended part of our family.

“I joined this research company to get help for my husband with memories issues. Now that he has passed I consider the people at PMR family and their efforts has been fantastic. I like that their efforts has been community focused.”

Rosetta Smith was an exceptional great advocate for her husband, Chuck, before he passed away from Alzheimer’s disease. Together, the two became like family with the Flourish Research  team, and were always willing to share their story with the community-at-large. Rosetta was passionate about helping spread the word that help might be available in the form of a clinical trial.  In the early 1970’s Rosetta along with her husband were involved in the Civil Rights movement and it is easy to see that passion helped them as they faced Alzheimer’s disease. Their dedication was commendable and Rosetta is a fierce advocate who helped so many.

“The most rewarding part was that the visits were affecting Chuck in a positive way. The days he came into the clinic he was usually better than normal. He had a positive attitude that he could make it through all the procedures. He appreciated the staff and all the people that worked on the trial with him. I appreciated the knowledge I gained from being in the study with him.”

Dennis is an excellent volunteer, who is cooperative and patient with all of the staff. He sings the praises of his coordinators, and even shares his experience with his social groups inviting friends to become involved and get screenings. Since beginning the study, the team has seen his confidence grow and it is  pleasure to work with him!

“Took a chance when my wife told me about this study. Not exactly kicking and screaming but definitely reluctant. After the first few visits, I felt comfortable with the staff. I actually missed them when the sessions were fewer and less frequent. The most rewarding aspect has been getting the help I needed and remembering.“

Gene is always willing to do whatever he can to help in finding the cure for Alzheimer’s disease.  He goes above and beyond to attend all of his scheduled appointments, and has never rescheduled. Prior to moving to the Tampa Bay area, Gene would drive more than 3 hours each way to get to the site for study visits. His dedication to research has been an honor to witness. Gene is an advocate for research participation in finding the cure for Alzheimer’s disease, even traveling to the state capital to bring awareness to state legislature about Alzheimer’s research.

“I joined the drug trial to try and extend my life. I didn’t know if I was getting the placebo but I wanted to help others. The most rewarding part is that we can help other Alzheimer’s patients see there are options and hopefully get more trial sites.”

Teri is a prime example of the best kind of study partner, as she has been supporting her husband who is in a clinical trial for Alzheimer’s disease and she previously supported her mother-in-law during her diagnosis and experience with Alzheimer’s disease. She ensures that her husband is always at his appointments when he needs to be, even if she isn’t with him. She’s very communicative with the study coordinator, even when she’s travelling. With true dedication, until a recent move, Teri and her husband would drive more than 3 hours each way to get to the site for study visits.

“We were shocked with my husband’s Alzheimer’s diagnosis but didn’t want to just stop with that. We learned there were trials and while we knew that there may not be a cure during Gene’s life we wanted to help future patients with this disease. It has provided us with support and a platform for us to advocate for others who have been affected by Alzheimer's. My husband and I have become involved with our state association and traveled to the state capital to advocate with legislators to grow awareness and secure bills to advance educational bills and monies for Alzheimer’s programs.”

Katherine is a great volunteer, bringing a bundle of laughs with her larger than life personality. She goes above and beyond as well, reaching out to family and friends to get involved through volunteering whether through luncheon events or attending prescreens. Her network of friends speaks to how wonderful she is, and the team at PMR is inspired by her. 

“I joined this study after attending a lunch and learn where they spoke about Alzheimer's and studies at PMR. It is rewarding getting the help I need to remember things. I have grown closer to Jim, my care giver.”

Bill is a great patient that reaches out to friends and family. Also, Bill and his caregiver are a dynamic duo that speak highly about volunteering, committed to helping find a cure in the near future.

“The most rewarding aspect of being in a clinical trial, is just having the comfort of remembering important things and people in my life. RECALL!”

Traveling over 300 miles round trip for each visit, Cynthia goes to extraordinary lengths to volunteer with nothing stopping her. Cynthia has been serving as an advocate in addition to her volunteering, and even received the NYS Governor Award for exemplary service, appointed by Paul Harris Fellow by Rotary Int. and picked as an exhibitor in the National Gallery in Stockholm Sweden. She has co-authored multiple publications in peer reviewed scientific journals on study participation, study rights, and impact of the dementia. She is a sought-after-spokesperson and advisor, and has impacted study design to make studies more responsive to participants wishes and needs.

She is a shining example of what a motivated research advocate can achieve. She has been involved for almost 15 years and made a major impact on local research participation, as well as growing into a substantial national and international presence. She has illustrated what a constructive role someone can play as a Citizen Scientist.

“My mother and her only brother, died with Alzheimer's, so it wasn't a surprise (but a sadness) to be diagnosed with aMCI in 2011. One way that I was able to move from "Why Me" to "What's Next" was to volunteer to participate in an Alzheimer's research study as a way to honor my mother and uncle and to help to move the science forward. Participating in research has been life-changing and life-giving. I know that my data, along with the data from other participants, is leading to new advances in dementia detection and treatments. It fills me with great hope.”

Christine works at VIP Home Care, and they have worked with local community centers and the local African American college to bring more diversity tour studies. Christine has been a great partner in presentations to prospective patients, as she is pro-research and she want to help educate the masses to help themselves and others

Christine aims to educate others about the advantages of research not only for themselves but for their friends and family as well. She has encouraged our patients to come in and screen so we can find a cure for this dreadful disease.

“It is important that everyone in the community gets involved in research. It is our obligation as a company to help with this. In my experience African Americans are inflicted with Alzheimer's and diabetes. Families need education, assistance and treatment.”

“Being trained physicians we understand the importance of clinical trials for the advancement of medicine in general and the benefits to be collected for the individual patients affected by the disease. The most rewarding aspect is the expectation of a successful trial and making a contribution to science.”

Micheal is a true advocate for research, and has been spreading the word to friends and families about the services provided at The Alzheimer’s Disease Research Center. Micheal has gone above and beyond in understanding and asking questions about the program. Micheal knew going into the program that there might be some bumps while being the first patient at the site for such an involved program, and yet has maintained a positive attitude.

Caroline has never missed an appointment during the almost 4 years she has been in the study. A true advocate, she has never hid from the disease and has always been telling people about her struggles with  memory.  Even after the loss of her husband, Caroline made it a point to continue volunteering in the study and her sister stepped in to help. She is an inspiration!

“My sister called me four years ago and told me about the Alzheimer's Clinical trial. I thought I didn't really want to make the commitment and get in the trial; but I said yes to support her. One of the best decisions I have made in my life. My husband supported me and went to almost all of my appointments when I first started. My sister went with me after he passed away.”

Jean’s dedication to her husband’s wellbeing is something to be admired, and could be the standard of care for caregivers worldwide. Jean attended every visit with Robert since they began their journey in Alzheimer’s clinical trials back in 2018. Since Robert’s Alzheimer’s diagnosis, they have worked together tirelessly to do whatever they can to shift the prognosis for Robert and other patients afflicted.

Jean has been incredibly influential, demonstrating a level of care, love, and devotion during a very challenging time in both her and her husband’s lives. She encourages people around her to continue to educate themselves on memory issues. She is an advocate of her friends and families continually going for memory screenings.

“A diagnosis of Alzheimer’s is a ‘gut punch’ to both partners in a relationship  A clinical trial offers one a positive step to join forces with those that are searching for answers. Certainly in our case the level of trust in the knowledge and abilities of the staff is a great comfort. Having staff that offer me suggestions for dealing with challenges and concerns and knowing that my husband is being seen by caring professionals and evaluated twice a month by a neurologist who has built a relationship with him and has earned his confidence is the primary reason that keeps us involved.”

Marie has made a great impact in research as far as her determination to get in; her persistance has served as an example to all that knows her. She has also made the effort to spread the word and getting her family involved in research. Her family has a history of Alzheimer’s Disease and she has made it her goal to spread the word as well as bringing in her sister for a screen.”

Mr. Van Huis’ attention to detail is critical to the study, and at times it feels like he is conducting the study alongside the team! He tracks thorough notes and ensures accurate data reporting in a timely manner. He and his wife are very punctual and have set up the next couple of years for vacations, etc. to work around the study schedule and ensure they are always on the target dates. They are warm and friendly and incredible sweet and easy to work with, making them exemplary volunteers.

“Clinical trial is the primary testing ground for the future of Alzheimer’s treatment. While my wife and I understand that there is no silver bullet currently, every trial pushes the advancement of science in finding a solution. My wife Mary Kaye has said to me many times that if her participation in the study can eliminate someone else being diagnosed in the future, she is happy with her decision to participate. To be married to such a strong woman, I am also proud to participate. “

Chicanos por la Causa (CPLC) is a partner to the site, providing support for Latinx-facing community events promoting research and education on the topic of Alzheimer’s Disease in the Hispanic community. Melanie fromCPLC has helped this partnership to blossom, aiding the site in successfully organizing 4 outreach events for a primarily Hispanic audience, which has increased community connections and allowed the site to carry out grant-funded clinical trial DEI recruitment efforts.

“The research being conducted to address Alzheimer’s and Parkinson’s diseases is of profound importance to both myself, and Chicanos Por La Causa. My desire to be involved in this research is rooted in my background in community advocacy and human rights practice. Through my practice I have developed a commitment to advocating for the well-being and rights of all individuals, especially those in underserved communities.”

Sharon is eager to contribute to research to help others, and she has been a dedicated volunteer participating in a demanding clinical trial for the past eight years. Despite the busy schedule, she has never complained and has always come with a smile and positive attitude. Sharon underwent two major surgeries in the last few years, and she bounced back quickly, restarting in her research visits soon after.

Throughout her clinical trial involvement, Sharon has maintained an active lifestyle with her husband’s support. They sing in a choir together and have travelled the world to perform. She still bowls (5 pin) and won the gold medal in the Ontario 55+ Summer Games in 2022!

“I joined to help others and myself. The knowledge of doing something positive about Alzheimer’s is the most rewarding.”

William is a true research hero. He is supporting his wife’s journey through the disease and her clinical trial involvement over the last eight years, while keeping her involved in meaningful activities. He understands the altruistic meaning of being involved in research with the hope that new treatments or a cure will be attained for future generations.

“It is important to me to try and find a cure for Alzheimer’s disease. To not only help my wife and children but also other people’s wives and children. The feeling of working on a solution is most gratifying. It is an outing for the patient with great interaction with patients and staff. It is another family. We have access to a doctor and clinical researcher every two weeks.”

Brian was an incredible care partner and always advocated for his loved one, even going to great lengths to ensure each appointment could be attended. Moreover, Brian was an advocate sharing information to friends and family.  He has a very open mind and has the best interest of the patient always willing to go above and beyond for research.

“For my mother, I would do anything in my power to help her and make her happy. So, it was critical to get her on the latest and most innovative treatment. The most rewarding aspect of this is the knowledge that my mother is receiving treatment that will hopefully slow the progress of this terrible disease; also we get to be a part of something that will benefit future generations and spending time with wonderful staff at Dr. Holub's research office.”

Sylvia is an incredible volunteer, coorperative and excellent at following instructions. Going above and beyond, she and her husband John are involved in social groups in their community and they share information about PMR and their successes here.  Sylvia is just not focused on getting help for herself , she wants to help others as well and find a cure for this dreaded disease.

“It is rewarding getting some help with memory issues and the people here have been terrific. My study came to an end in April so I am waiting to see if I qualify for another. I am optimistic as the team there are very good at keeping us informed.”

James is dedicated to finding a cure for Alzheimer’s disease not only for himself but to help. Kind and easygoing, James works well with others and is very diligent with the study, encouraging others to screen.  He encourages friends and family to find out more about research and the benefits

”I am optimistic as my memory has not gotten worse. I like that this study cost me nothing  I am optimistic that they find a cure or get me into another study at a later time.”

Richard is not only an exceptional study participant, but a standout example in the efforts to find a treatment for Alzheimer’s disease. His positive attitude, sunny disposition, and affinity for jokes in the face of adversity and the difficulties of the disease are truly inspirational and have made working with him a great experience.

“I have met many wonderful people and have been exposed to multiple research papers and clinical articles. Being an imager, I know what the PET, MRT, and CT images reveal as I used to perform these same images. In the past 11 years, some of our friends and family have been diagnosed with this horrific disease. The knowledge we have acquired through these clinical trials has helped them as well. Meeting these people has been the most rewarding aspect. The clinical personnel were kind, understanding, and always very helpful. The doctors are supportive and give great suggestions.”

Dr. Davis and his wife, Mrs. Jeannette Davis, have been dedicated to their clinical trial as they have communicated effectively and professionally with the study team. They both go above and beyond to help prevent this debilitating disease. Dr. Davis did an interview on Bay News 9 locally and spread awareness on the importance of Alzheimer’s clinical trials and especially for minorities. By sharing his experience on the news, it has made a significant difference in reaching traditionally underrepresented populations and more people are inquiring how to get involved in clinical trials.

“The most rewarding aspect of being in a clinical trial is the sustained hope of a cure being found. “

Laura is an excellent volunteer, coming to all visits with a positive attitude and even going above and beyond to give great presentations on brain health and other activities related to Parkinson’s disease.  She and her partner put their time and effort to participate in the study and their commitment inspires the team to find solutions for Parkinson’s disease.

“I have always wanted to know the 'why' behind everything. When I was diagnosed with PD ten years ago, joining a medical trial seemed a way to get a front-row seat to a major event that was happening to me. Being involved in a clinical trial makes me feel like a pioneer, or part of an exploring expedition clearing the way for those coming after us. It is the way progress is made.”

Linda and her wife are world travelers, and that doesn’t stop her from volunteering every 22 days in her clinical trial! Linda has the best attitude towards life. She is always so positive and never has a bad day. Their stories and pictures not only inspire the staff, but other patients to get out and travel. At this point it’s not about the memories it’s about the experiences and doing the things you love with the person you love while you can.

“Why did I join? One word: HOPE! Hope not only for me in my quest to get better but also that my experience will help future generations. The most rewarding thing about volunteering is knowing that research like this helps not only me and it helps move forward so that one day this disease can be managed.”

Bonnie’s commitment to the study she is currently enrolled in is truly commendable. Despite the significant distance she has to travel from the Lower Mainland to the Okanagan on a monthly basis, she consistently prioritizes her study visits, demonstrating responsibility and reliability. Moreover, her willingness to engage in optional sub-study procedures showcases a deep understanding of the importance of scientific research and a genuine desire to contribute to the advancement of knowledge. She exemplifies a proactive approach to participation that benefits the research and reflects her dedication to the betterment of science.

“I chose to be part of a Clinical Trial because it is my best chance for my own therapy with Early Onset Alzheimer’s and it will benefit others with the information revealed throughout my Alzheimer’s journey. The most rewarding aspect of being involved in a Clinical Trial is the opportunity to be seen regularly by caring, compassionate people who understand clinical trials and Alzheimer’s and are the most current in understanding diagnosis, and the journey forward.”

Don has been a trouper coming in and staying with his wife while she is being dosed. He is patient and kind to the coordinators and staff alike.

Mr. Garner has bravely shared his experience with this disease as there are no friends or family going through this. He has learned a lot and wants to do all he can to follow the directions and make the best experience for his wife and others.

“I joined Progressive Medical Research (PMR) when a friend who was also a caregiver told me about them. My hope is the doses work and my wife remembers our time together. The atmosphere at PMR is very relaxing and everyone is so nice. We have been here for 2 out of the 3 years of the study and we continue to be optimistic. People have been very helpful and supportive.”

Trudy has brought a great spirit from the beginning. She loves being part of the study and has been great at following directions and making the most of the experience. As part of the Daytona Shores community, she encourages others about volunteering.  She is quite involved to make sure his process is right and she wants to find a cure for herself and others.

“I am happy to be there as everyone was so receptive and welcoming. I am in a non-medicine study so I am glad not to have any substance reaction. The most rewarding part is that by doing the daily routines I feel I am making a difference. I am optimistic about the help I am getting and the people that are assisting me.”

“We joined PMR because my husband used to do their ads for the Lifestyle magazine in the area. He had done a study or two on the diabetes side of things but his memory worsened and we got him tested. The experience has been amazing as the people are great and they treat Paul like family. The most rewarding part is getting Paul some help so his memory does not worsen.”

Nancy Pilblad is a saint. She has been a caregiver for her husband Paul for a few years. Paul was a writer for a local magazine, and Nancy and Paul have been involved, working with other businesses in the community. Their experience with this disease is tremendous as they are well-known in the area and have other family members with the disease. They have experienced loss and know how it affects the whole family, and yet they give back in hopes of helping others.

Barbara is committed to learning more about the disease by participating in clinical trials, wanting to be a part of a cure for future generations. She knew that she had a risk of developing the disease, but that did not scare her, and she faces the disease head on. A true advocate for clinical trial participation in her community, she shares her story at church, and on social media. She shows so much courage and bravery, inspiring others by sharing her story and experience being in a clinical trial.  

“Since my mother had Alzheimer's and passed away from it, when I was diagnosed with AD it is important to me and my husband, Jeff, to be involved in a study to find a cure for this ugly disease. We are able to contribute in a clinical study to hopefully find a cure which will improve so many people's lives.”

Harvey is a trip and an excellent volunteer! He is kind to everyone  and works with the community to help others in need. His study partner is lovely as well. Harvey is always telling people about how they can help with Alzheimer’s and other studies. He wants to find a treatment and will encourage others to participate understanding the need for more volunteers to help find the much-needed cure.

“I was having issues with my memory and I attended one of PMR's lunch and learn education session.  I was asked to come in for a screening and I made it into one of their studies, It has been such a pleasure working with the team. The best part of this study is that it continues to be a help to me since 2022. The people here are so kind it is indeed a pleasure.”

In assessing Robert’s contribution to the quest for Alzheimer’s treatments, his multifaceted approach and unwavering dedication is to be commended. Not only does he provide invaluable support to his spouse throughout their clinical trial journey, but he also dives deep into research, leaving no stone unturned in his quest to comprehend the intricacies of available treatment options. This thorough approach reflects his profound investment in securing the best possible outcomes for his loved one. Furthermore, his actions speak volumes about his determination. He tirelessly supports his spouse through multiple screenings and trial enrollments, showcasing a relentless drive to contribute meaningfully to the advancement of medical research in this field.

“Medical science continues to progress in understanding the brain and related diseases. It is exciting and rewarding to play a small part in assessing and proving the technology to address brain disorders. We understand that new approaches and strategies must be tested with the attendant risks and rewards.”

Rich always makes you have a smile on your face, cracking jokes throughout his visits. He tries to do what he can to make sure things run smoothly and will try to do as many trials as he can to feel like he is helping the community.  As a retired pastor, he uses that knowledge and experience to help as many people as he can, and he is an exceptional volunteer.

“I joined a clinical trial because I was interested in seeing not only if the medication would help me, but also help others. The most rewarding aspect of being in a clinical trial is all of the help we get and hopefully the ability to help others in the future.”

Mr. Kyser brings dedication to research to a new level as he drives from Oklahoma to Texas for every single one of his visits. He wants to be the voice for Alzheimer’s disease and bring awareness to the community whether through his social media presence speaking to his peers about his journey and how research has given him hope.  With the love and support of three generations from his family, Mr. Kyser is encouraging anyone who needs resources or help to look into research.

“My hope in participating is to find a drug to treat this disease and offer hope to my children and grandchildren. The most rewarding aspect is giving hope to others that have Alzheimer's that there is great research happening, and being able to tell others that help does exist.”

Donna is a committed and inspiring study partner who has remained a steadfast support for her husband as he has participated in clinical trials. Donna attends caregiver group meetings and is always encouraging others to get involved as well. Her outstanding commitment to research is evident as she has an unwavering support for her husband despite any obstacles that Alzheimer’s disease throws their way.

“This disease has been in both mine and my husband's families and we wanted to try to contribute to finding a cure for future generations. The most rewarding aspect of supporting my husband is knowing that I am doing everything I can for him, and it also makes my husband feel good about what we are doing.”

Charles has been committed to participating in any kind of research that will advance the knowledge and science of finding new treatments for Alzheimer’s disease. He has given a substantial amount of his time to this quest, completing a demanding study that involved long visits and many assessments. Despite the demanding schedule, he has participated in sub studies without hesitation.

Charles is an avid woodworker, with a specialized craft in intarsia. He has designed several pieces for the Kawartha Centre and is happy to be able to continue his craft. A day doesn’t pass that someone doesn’t comment on this work as it brings a warmth to the rooms where the designs are proudly displayed.

“Being involved gave me an opportunity to help find a cure for Alzheimer’s which could help my family as well as others. For me the most rewarding aspect of my involvement in this clinical trial is having the opportunity to take part in research which could result in helping the many people suffering from Alzheimer’s disease.”

For the past decade, Debbie and Ed have dedicated themselves to enhancing the lives of individuals and families affected by dementia. Debbie still pursues this mission through knowledge, training, education, and an unwavering belief in the effectiveness of Person-Centered Compassionate Care with Ed looking over her shoulder from above. Charter Research is a proud partner of Coping with Dementia and brings that same compassionate person-centered care into the clinic, thanks to the teachings of Debbie and Ed.

Terrance is the ideal research participant that every research coordinator dreams of working with. He is a joy to work with; always very kind and compassionate. He is very attentive when answering coordinator emails or calls. He is truly dedicated to this trial, and to the Alzheimer’s research community. Without him, and people like him, we would not be able to do what we do in advancing our knowledge of the disease and the investigational drugs we study.

“As a research biologist with a science background, I researched blood oncology drugs and appreciate anything I can do to further the therapeutic cause. My background is Oncology research and I was involved with blood cancer studies, where I did a lot of reading literature on candidates and pharmaceuticals. Which put forth the privilege for me to be involved with research in my career. To have the opportunity from a familial standpoint has been an honor.”

Mike is a positive voice in our community, sharing his experience with being involved in research. Going above and beyond, he does his own external research to ensure he is educating himself on all Alzheimer’s disease updates. He is motivated to know that his role fits into the larger picture of someday finding a cure and an exemplary volunteer.

“Alzheimer's is complex and a difficult disease. Diagnosis and treatment needs further development and that's why I join in the effort to one day find a cure. The most rewarding aspect of being in a study is being able to help the development of treating or eliminating this disease for future generations.”

Darrell is an exceptional volunteer, committed to do what it takes for the study. Darrell and Desiree are always ready to adjust and work with the site to ensure all the correct data is collected. His commitment and positive energy encourage everyone onsite. He is not shy to walk his steps down the hall while singing, and the smiles he gets from everyone makes the day brighter.

“I joined to see if this new drug could help me, as I was in the beginning stages. If it did not help me, then perhaps with the other participants, collectively we could help the medical research center in gaining valuable information concerning these drugs on the different genders and diverse aging population. We are all praying for an answer to end this disease. Knowing that my participating is helping to find and perhaps lead to a cure, or at the least a much slower progression of the disease. I was able to get to know the people who worked at the center that have become like family and I have actually looked forward to going for my treatments.”

Stephanie’s mother had Parkinson’s disease, and she has been a pillar of strength for her husband, Joe who was diagnosed. Her role as a supportive wife, mother, advocate for Parkinson’s research, and source of positivity showcases her unwavering commitment to making a difference. Through her actions and attitude, she inspires other to embrace hope, support scientific advancements, and approach life’s challenges with courage and grace. Her positive attitude radiates to those around her and the QUEST family.

“I learn something new about Parkinson's each time we are involved in a clinical trial. They help me to better embrace and learn to thrive with Parkinson’s disease. My husband gains a feeling of purpose and feels like he’s playing a more active role in his health.”

When Tony was first diagnosed with Parkinson’s, he quickly realized he had a couple of options. As he worded it, “I could let it take control of me, or I can take control of it.” Tony decided to participate in a trial with no hesitation. His kind and calm demeanor is so appreciated by the entire Quest staff. Even when some visits may take up a greater part of his day, he remains dedicated to the cause.  He encourages everyone to participate in a trial if qualified and continues to educate himself on Parkinson’s to see what more he can do to help find a definitive treatment.

“I've come to believe that it's not what happens to you in life, it's how you choose to respond to it. I have chosen to beat Parkinson’s. One effective way is to take part in clinical trials. After every trial I've been part of I feel that I helped get one step closer to a cure. I continue to learn more about the disease, the progress that's being made and how my participation is contributing to the progress. I feel like I’m part of the solution. And I've also met some wonderful people/resources.”

Deb has dedicated her life to making a positive impact on the lives of people with Parkinson’s. She understands the physical and emotional challenges that come with Parkinson’s and uses her knowledge and experience to empower her clients and help them regain control over their bodies.

Deb encourages her Parkinson’s clients to get involved in research. She has many clients that are involved in our Quest Research studies, and they in turn, those participants encourage others to participate. Deb believes that together we can improve the quality of life, improve treatment and hopefully soon find a cure for Parkinson’s.

“There is no cure for Parkinson’s and all medications on the market are systematic. Research not only focuses on finding new treatments but also aims to enhance the early detection and diagnosis of Parkinson’s enabling earlier interventions that can slow disease progression. Research coupled with exercise helps our community to have a better quality of life and help advance science. I strive to help people’s lives – through education, exercise, community!”

Julia’s impact on the Parkinson’s community has been remarkable. With an extensive background of 26 years working in this field, coupled with her personal experience, she has become a beacon of inspiration for others. Julia’s deep understanding and empathy for Parkinson’s disease, stemming from her father’s own battle with the condition, uniquely positions her to build trust and establish meaningful connections within the Parkinson’s community. Julia’s ability to empathize with others enables her to effectively educate, engage, and empower the community to participate in research. Her dedication and personal connection make her an invaluable advocate in driving awareness, collaboration, and progress in Parkinson’s research.

“With my unique perspective, both personal and professional, I am driven to see an end to Parkinson’s disease. I understand firsthand the challenges and impact it can have on individuals and their loved ones. However, while we work towards finding a cure, it is important to support the Parkson’s community and ensure that no one feels alone in their journey. I am committed to helping others navigate the complexities of the disease by providing information, resources, and a listening ear.”

Donna is a leader in educating people from diverse communities about aging and memory loss and the importance of clinical research. As a true advocate, Donna lends her voice and offers her experience to promote diversity in Alzheimer’s Disease research. She shares her story publicly whether on local broadcast stations, or in the Boston Globe Magazine in hopes of inspiring others. The team at Mass General Brigham admires her dedication to helping in finding more volunteers to improve the future of clinical research.

“The most rewarding aspect of being in a clinical trial is seeing if the medication works! If not for research, there would be no cures for anything.”

Karen and her husband Brian stand as beacons of proactive engagement in Alzheimer’s research. Their proactive approach includes staying abreast of the latest advancements and therapies, ensuring they are well-informed allies in the fight against Alzheimer’s. Despite initial setbacks, Karen’s willingness to undergo rigorous procedures showcases her unwavering commitment to advancing scientific knowledge. Beyond personal benefit, she leverages her diagnosis to empower others, striving to alter the trajectory of this disease for future generations. Karen’s contribution transcends the confines of a clinical trial; it embodies a fervent pursuit of hope and progress.

“The Okanogan clinical trials have offered us a “window of hope”. It is most rewarding to know that the medic trial team are all committed to CARE, support and assistance for both of us throughout this entire journey.”

Debby is extraordinary with dedication to Alzheimer’s research AND caregiving that is truly inspiring. She was the first participant to agree to travel across the country monthly to participate in a Phase 1, highly innovative clinical trial for Alzheimer’s disease. Her commitment to understanding and combating Alzheimer’s disease goes beyond herself; she is also a devoted study partner and caregiver for her sister, navigating the challenges of memory loss with empathy and devotion.

Debby envisions designing a care home specifically for patients and their spouses dealing with dementia and Alzheimer’s. Her dream is to create a supportive environment where couples can continue to live together while receiving tailored care. Her vision is rooted in practicality and compassion, aiming to provide meaningful support and enhance quality of life for families like her own, navigating life with memory loss.

“My initial trigger was to help my immediate family as we’ve lost four relatives to Alzheimer’s plus I have two elder siblings who’ve been diagnosed. However, I also felt an overwhelming desire to help advance research to find new paths to pause/stop the advancement of Alzheimer’s for others. Being involved in the Alzheimer's Clinical Trial makes me feel like I’m playing an active role in managing my health while at the same time helping future generations of my family, as well as society at large, benefit from modern medicine’s scientific advancements.”

Geraldine’s positive energy and easygoing personality makes her the perfect fit for a complicated, multi-visit clinical trial. As a satellite site for another clinical trial center across the country, participants are required to travel monthly from British Columbia to Ontario for up to a week at a time to receive treatment and adhere to the study protocol. She believes every study visit is another opportunity for her to contribute towards finding a better treatment and improving the wellbeing of future generations.

“The most rewarding thing is the fact that I will be helping myself and also possibly helping the public, family & friends in the future. It makes me feel very optimistic.”

Craig was a Navy Hospital Corpsman for years which volumes about his dedication to caring for others. This experience, along with caring for his ill mother, has instilled in him a deep sense of compassion and desire to make a positive impact on people’s lives. After completing his service, Craig pursued his passion for science and obtained a degree in Microbiology from MSU and spent his career in manufacturing health and beauty aids. Craig’s belief in giving back to the community and helping others is evident in his participation in research and helping to find better treatment for himself and future generations

Craig’s ability to lighten the mood and bring a smile to everyone’s face adds a valuable element to the research environment. Craig’s dependable nature, positive outlook, and fun-loving spirit make him an invaluable asset to the visits, contributing to its success and creating a memorable experience for all involved.

“Recognizing the potential benefits of research, I embraced the opportunity to possibly help my own cognitive abilities. My ultimate goal is to contribute to the development of interventions and treatments that may help others facing similar challenges and help mankind. One of the most rewarding aspects of being involved in research is the profound sense of doing something good. Despite my long commute and demands it places on my time, I find myself embracing each visit as if I were going to a job. The sense of purpose that comes with being part of a larger mission, aimed at improving the lives of others, is immensely gratifying.”

Eric goes above and beyond what you would normally expect from a volunteer. Not only does he participate studies, he has also persuaded others to participate and volunteered his time and effort as a study-partner for someone involved in another study. Whether in his church or community, he is an advocate looking to make a substantial impact.

“I like being involved in the hope that any information that can be gleaned from the results of the testing will further the research into finding a way to slow or stop the progression and perhaps prevent Alzheimer’s and dementia entirely.”

Gwen is an extraordinary volunteer filled with energy and genuine care for others. She goes above and beyond, remembering details about staff’s lives and ensuring their well-being. But her dedication doesn’t stop there. Gwen selflessly volunteers her time to participate in a clinical trial to contribute to the advancement of medical research.  As a grandmother who watches her grandchildren, she balances her schedule to ensure she can attend every visit and is inspired to give back in hopes that the next generation has hope.

“I joined an Alzheimer’s clinical trial because I fervently believe that eventually Alzheimer’s Disease (AD) can be prevented. I feel extremely fortunate to be involved in a clinical research trial, partially because I’m not very good at ‘sitting still’. I feel that I am contributing to advancement of knowledge and progression of research to find a way to cure or prevent AD. Staff at the Toronto Memory Program are extraordinarily talented at ensuring trial participants feel valued and part of a friendly community. My visits always feel like opportunities to catch up with friends.”

Michael is a true advocate for research who has not let his diagnosis get in the way of his life. He participates in Rock Steady Boxing and power workouts through The Michigan Parkinson’s Foundation.  Recently, Michael has also been given the opportunity to become a mentor through MPF, a position in which he would be able to advocate for research opportunities and even help newly diagnosed candidates through their hesitancy about participating in trials. Michael strives to not only continue educating himself, but others as well about the importance of participating in research to one day find a treatment for Parkinson’s.

“Joining a clinical trial for Alzheimer’s or Parkinson’s disease offers hope for better treatments and eventual cures. Being involved means contributing to scientific progress, potentially benefiting countless others. The most rewarding aspect is knowing you’re making a difference.”

As a former teacher and minister, Kimi leads by example taking care of her health and spirit, and participating in trials for Parkinson’s Disease to help find better treatments. Always up for a new adventure, Kimi takes part in a virtual Parkinson’s cycling class three times a week which led her creating a women’s support group for Parkinson’s. The group meets twice a month virtually to not only discuss how to uplift one another but what more they can to do help advancements in Parkinson’s research overall.

“Initially I got involved with research because I thought I could contribute to the wider disease knowledge, possibly contribute to the cure at some point and help slow down my own disease progression. I was also motivated by my own need to feel useful. The way I look at clinical trial participation is that I can do it, so I should do it. I got involved in recruiting because I hoped sharing my experience would make it less frighting to others. We need more people willing to participate. I talk to anyone who will listen about the added value this has been to my life.”

John and his wife, Jane, are a remarkable couple who have become true ambassadors for clinical trials. They are active in the 55+ community where they live, and they have encouraged others to pursue testing and clinical trials as an option. They have even recruited neighbors to become trial participants. Their passion is authentic and inspires others to give back as well.

“It might not help us, it might not be in our lifetime, but for our kids and grandkids, knowing we helped. Knowing that we helped SOMEONE. We did the best we could and luckily for us, we were surrounded with very warm, receptive, smart people who were going out on a limb with something new. We did well working with them and I think everyone got a lot of comfort out of it.“

Barbara, a passionate community member in Hannibal Square Heritage Center, has been instrumental in fostering productive conversations and encouraging participation in research. She has actively advocated for community involvement in important decisions and studies. Barbara’s dedication is evident through her invitations to significant events and her eye-opening interview with neurologist, Dr. Sheila Baez-Torres. Her efforts have helped dispel historical barriers to participation.

“My extensive years of working with the most vulnerable populations have made me keenly aware of the lack of access to health education and resources in under-represented neighborhoods. It is vitally important for research companies and trusted community organizations, like Hannibal Square Heritage Center to develop a sustainable partnership with ongoing dialogue as a way to create a bridge to services, where the information is presented with accuracy, relatability, sensitivity, and practical to implement.”

Debbie’s relentless dedication to clinical research is helping not only herself but others in the future to find out if a study medication might reduce the plaque in people’s brains much earlier in life and before symptoms appear. She is leading her legacy by being selfless and showing the importance of participation through clinical trials to find a cure and/or treatment to Alzheimer’s disease.

“It is rewarding knowing that I am helping others in the future who may develop these ailments to be able to discover a treatment or cure. I would be so honored to know I was a part of that.”

Suzanne has been an incredible advocate for her husband Mike through his diagnosis. She attends every visit with him, takes notes and advocates on his behalf. He, himself, will say they are partners in this disease. And as his partner in disease, she has become a champion for all those who suffer. They both active members of our monthly “Patient & Partner Support Group” and she comes to our “Caregiver Support Group.” They are both so open and so willing to share their story, all in the name of providing hope to others.

“I think that I saw a difference in Mike; that was also encouragement for us. When you’re given a diagnosis of Alzheimer’s, you have to think about the risk and reward. We were reassured up at JEM and doing a clinical trial, it might not help us, it might not be in our lifetime, but for our kids and grandkids, knowing we helped. Knowing that we helped SOMEONE. We live in a small community, only about 200 houses. We became friends with people who know Mike’s situation and they have since gone on to volunteer. It’s also a reward, knowing that they saw Mike and how he benefitted from just being involved in a clinical trial. “

Pamela has an unwavering commitment to advancing clinical research and offering hope to those affected by Alzheimer’s disease. In her journey through the progression of her husband’s diagnosis, their combined efforts not only provide invaluable data for scientific study but also highlight the critical importance of comprehensive care and emotional support in managing the disease. Their story is a poignant reminder of the resilience of the human spirit and the impact that individual decisions can have on the broader medical community and future generations.

“We joined an Alzheimers clinical trial because John wanted to help others, even as he faced his own battle. It was a chance[AS1]  to contribute to something greater, to offer hope that future families might avoid our pain. Being part of this trial means beginning to heal while we help.”

Richard joined clinical trials to support his wife in early detection. They were a part of one study that they saw success in, so they have joined another in hopes to advance research and pursue finding a new gold standard. He is a wonderful support system, and his willingness to help others is admirable. 

“I view clinical trials as a way to both advance research and to pursue treatments that may be available one day.” 

Susan is a true advocate for research, encouraging her four sisters to get cognitive testing. As a positive force representing the importance of clinical trials, she shares information on studies and research innovation with the community, and is a cherished volunteer by the Renstar team.

“I wanted to do something. I wanted to be proactive and not sit still and let the disease overtake me. It has been rewarding meeting others with the same issue and talking to them.”

Susan’s contributions to Alzheimer’s research has profoundly impacted the community. Through active involvement in clinical trials and advocacy efforts, she has raised awareness about the disease and the urgent need for effective treatments. Her participation in multiple clinical trials demonstrates not only a personal commitment but also their willingness to contribute to scientific progress.  

“I support my spouse in Alzheimer's clinical trials to contribute to finding a cure and improve future outcomes. Being involved means actively participating in research that could change lives, including our own. Its a chance to make a difference and hold onto hope for a better tomorrow.”

Sandy has devoted herself to supporting her husband John, witnessing firsthand the adversity AD brings to a loved one. Recently, she organized a heartfelt vow renewal ceremony in Waikoloa, Hawaii, marking 45 years of marriage and reaffirming their love despite the disease’s challenges. Beyond her role as a loving wife, Sandy has been an exceptional study partner for John.

Outside the trial, Sandy tirelessly advocates for Alzheimer’s awareness and seeks resources to understand the disease’s complexities. Her impactful discussions with patients and advocacy efforts in her 55+ community showcase her dedication to educating others about AD and clinical trials. Sandy’s honesty about her caregiving struggles extends to online forums, where she shares experiences and offers support to fellow caregivers.

“We moved to Orange County to find a clinical trial for my early onset Alzheimer’s husband and found Syrentis Clinical Research. As an Advanced Practice nurse I am glad to be his support person during this difficult journey in our lives. One rewarding aspect is that the education provided to us is helping us to prepare for what is to come. Another rewarding aspect is that our participation in a clinical trial provides hope, and it reminds us to enjoy each day we have together. To show support, we walked in the Irvine Walk to End Alzheimer’s event last fall and raised $6000 in donations for the cause.”

Pam’s dedication to the pursuit of a cure for Alzheimer’s disease is exemplified by her proactive and unwavering efforts. Her commitment extends beyond mere testimony and is demonstrated through tangible actions. In her own diagnosis journey, Pamela was proactive in seeking a clinical trial that suited her, and she has taken it upon herself to share her experiences and knowledge with others, advocating for the importance of early testing and participation in clinical trials. By actively engaging in outreach and advocacy efforts, Pam has played a pivotal role in raising awareness and encouraging others to join the collective effort in the search for a cure or treatment.

“For me there are several rewarding aspects to being involved in a clinical trial for Alzheimer’s disease. First with the use of Alzheimer's disease I’m glad I can be a part of the research to hopefully find a way to slow down the disease or perhaps even find a cure. I have personally seen the effects of Alzheimer’s disease on individuals and families, and it’s heartbreaking. Also, it is rewarding to meet the people who are running the study. They are kind, friendly, and hard working. I actually look forward to my infusions!!”

Coping with Dementia is a company that has always been focused on education, training, and community awareness to become more Dementia-Friendly, because that fulfills their mission, “To make life better for individuals and families living with dementia.”  Through education Coping with Dementia and Renstar have been able to inform and empower people to open their minds to an option of clinical trials for Alzheimer’s and/or Parkinson disease, but it also goes beyond the trials.

Through education we have been able to provide people with the opportunity to start the process of defining what may be happening to their loved ones with Alzheimer’s and/or Parkinson disease. Coping with Dementia feels that the partnership with research is a way to help with finding a cure. Their belief is that “Until there is a Cure …There is only Care”.  with research is a way that we can help with finding a cure. We believe that “Until there is a Cure …There is only Care”.

“Coping with Dementia is very honored to be considered for such an award. Research companies have become a vital tool in our toolbox of resources, but more than that we have become partners in the education of the community, answering questions, offering a hand of hope in what they may be dealing with. I feel that through this partnership we have lessened the fear and stigma of research.”

Cynthia’s unwavering commitment to finding a cure for Alzheimer’s disease is truly unparalleled. Her dedication is evident not only in her words but also in her actions. Despite the challenges of distance, Cynthia consistently drives a long way to attend the trial, demonstrating her deep-seated determination to contribute to medical research.

Cynthia also proactively advocates for Alzheimer’s research, leveraging her voice and influence to raise awareness and garner support for ongoing efforts to combat the disease.  Her contributions are invaluable in advancing our collective mission to ultimately conquer Alzheimer’s disease and provide hope to millions affected by this condition.

“The realization that my actions today can shape a brighter tomorrow for future generations fills my heart with boundless hope and joy. Prior to embarking on this journey of participation in the clinical trial, I often grappled with feelings of hopelessness and uncertainty. However, through my involvement in the study, I have discovered a newfound sense of purpose and meaning.”

Ernest has been outspoken in the community regarding early onset Alzheimer’s and the impact of the disorder on the entire family’s lives. His unwavering support to his wife, participation in the study, and willingness to share his experiences contribute to the well-being of his partner, advance knowledge of Alzheimer’s disease, and create a supportive community for other families facing similar challenges.

“My wife was diagnosed with early onset Alzheimer's at 57 and she wanted to join the study so she might be able to help others in the future and be a part of the solution if possible. It is rewarding to know you are part of something bigger than yourself and have the opportunity to be a small part of the cure.”

Progreso Latino has been a long-time partner with the Butler Hospital Memory and Aging Program (MAP). The relationship started off by MAP being a vendor at an annual health fair hosted by Progreso Latino. The most notable partnership was when MAP won a diversity grant through ADNI-3 and it led to a Brain Health Room being set up for their seniors. The Brain Health Room was a space MAP and the community liaison (Dilenia Cruz) could use for one-on-one discussions about memory concerns.

Dilenia, the leadership, and staff at Progreso Latino have been nothing but welcoming to our program. Whether we are joining the Central Falls community for a family event, helping at their weekly food pantry or just providing a presentation, everyone has been incredibly generous with their time.

“Understanding the variables that affect Hispanic or Latin American communities due to which our people are at risk and develop Alzheimer's is key to being able to prevent it and/or treat the disease. Getting more people aware and involved in clinical studies is an open door to new hopes for healthy aging where our elderly can be more present in productive society and in their own lives and in their families’. Another element that commits us is to combat the fear and shame due to the stigma that many people in our communities feel when they talk about having someone with incurable diseases such as Alzheimer's in their family.”

Domenic’s willingness to share his wife’s diagnosis with family, friends, and neighbors is inspiring and his unwavering support for his wife is a model to his community. He helps raise awareness about Alzheimer’s disease and its effects on families. Domenic’s willingness to share his journey inspires others in similar situations to seek help, resources, and support, fostering a sense of community and compassion.

“We joined the study because my wife had recently failed a cognitive test. My PCP recommended the Compass Clinic (PPD/Synexus's former name). We were offered a PET scan indicating an Alzheimer's diagnosis and invited to participate in a study; an answered prayer. We hope that data collected will aid in future studies to eliminate Alzheimer's disease.”

Since her first day, she has brought a warmth to the site and has connected with each member of staff and fellow volunteer that she interacts with during visits. She travels back and forth between Florida and California, where they build houses for the homeless for free, and traveling back and forth across the country has never once impacted their ability to make it to appointments.

Kathryn radiates light and warmth and is extremely dedicated to finding a cure for Alzheimer’s Disease. She tells as many people as she can about the benefits of research and the amazing experience, she has had in hopes that more people will join clinical trials. She makes sure to complete everything that the protocol asks of her without any hesitation all with a mile wide smile.

“I am blessed in every way. We’ve had a lot of bad things happen in our life, but we focus on the good things like this study and the improvements I am seeing with my memory loss. I will feel the most reward once this medication becomes readily available for the public."

First and foremost, Karina’s compassionate care for her husband has served as a model of love and resilience for others facing similar challenges. Her ability to maintain patience and dignity in the face of adversity has undoubtedly provided solace and encouragement to caregivers and families navigating the complexities of Alzheimer’s Disease.

Beyond her direct caregiving responsibilities and advocacy work, Karina’s presence in the community has fostered a sense of unity and support among neighbors, friends, and acquaintances. Her strength and grace amid personal hardship have served as a source of inspiration for those who have had the privilege of witnessing her journey.

“My husband was diagnosed with Alzheimer’s (along with other neurological conditions) 6 years ago and we were referred to the study. We had hoped that the study would slow the effect of his illness and we as a family would have more time. It was rewarding knowing that we could take part in something not everyone has the opportunity to do. It made him happy to know that even if it didn’t help his situation the information that was gathered could possibly help someone else.”

Mayra has been committed to helping find a cure or assistance for Alzheimer’s Disease since she was young. Her mom was diagnosed with Alzheimer’s Disease and Dementia. Mayra is a great example of what the Hispanic community goes through everyday. Mayra is inspirational as she educates herself and her siblings by expanding their horizons with the resources being offered. Mayra is the perfect Citizen Scientist because she is trying to make a difference in lives around help by seeking help and guidance.

“My family has been highly impacted by this Alzheimer's Disease. It is important to understand why this is impacting me and my family. It is so rewarding getting answers to questions I've had for so long."

Fernando has been participating in a research study and in support groups and community events. By sharing his experience others see how easy it can be to volunteer. His family helps ensure that he is active and involved in the study. He is a treasured volunteer.

When asked what was the most challenging, Fernando said, “Nothing. Everything worked well with our friends.”

Ranulfa is always readily available to participant in studies and community events sharing her experience with research. By speaking about her story of research participation with friends and family, she is a true advocate. She is proactive when it comes to her health and is an inspiration to all she meets.

“It is rewarding to be an assistance and see so much humanity in this program”

Alba is a remarkable volunteer who speaks to the community about life living with Alzheimer’s disease. Alba does this in order to normalize the disease and reduce the stigmas that surround clinical research. Alba has been able to refer friends and family members to start their journey for prevention trials.

“It is rewarding Being able to be part of studies and (or) clinical discoveries that can help future generations in all aspects of health and well-being.”

Carmelo has dedicated the last two years to acting as a study partner/caregiver for Alzheimer’s Disease clinical trials. He has been a significant pillar of support to the successful enrollment of his spouse into clinical trial. Carmelo is not only focused on how his wife will be helped, also how this research can aid others in the future.

"My dear wife and companion of 50 years was diagnosed with Alzheimer's which was very devastating, therefore I am interested in the resources available to combat this health condition, even if they are in a research stage but that are beneficial for her. It means doing something to develop an alternative to combat this disease for the well-being of all those diagnosed and in a preventive way."

Maria is an admirable caregiver, helping her family and friends to learn about Alzheimer’s disease. In going above and beyond, she ensure that her husband could make it not only to all visits, but also events happening at the site.

“I joined clinical research to better and educate myself and accept the situation I was in with my husband. The most rewarding part was to learn more about the disease.”

The City of Cranston is a dementia friendly city, and this senior center has consistent programming to reflect that distinction. The Memory and Aging Program (MAP), led by David and his team helped write and disseminate a needs assessment survey to more than 270 people to determine areas of improvement for increasing representation of underserved communities within our research studies and our memory clinic.

David has been an invaluable partner, with positivity and a can-do spirit. His deep passion to bring the best educational experience to his community is unmatched. David is a wonderful teacher as a proud Latino, with incredible insight into how to best reach the community and find willingness to collaborate on events.  

“Since we started our Dementia-Friendly work back in 2017 we recognized that the lack of knowledge about Alzheimer’s and Parkinson’s disease impacted both the Primary Care medical professionals and the community at-large. This fact made us embark on a journey of educating ourselves by carrying out a Community Assessment in the City of Cranston. Some of the major issues that were uncovered by our Community Assessment included the fact that folks afflicted by AD or PD did not know where to start looking for help once they had a diagnosis or noticed that something was wrong with their loved one as far as their memory health.”

Misa goes above and beyond in the community to help advocate for research, and has been involved with research at Premiere Research Institute for over 20 years. As a friendly face for all new volunteers, she welcomes everyone she meets and provides supports and resources outside of the study that can help set up volunteers for success. Misa is always there to help.

“We know there is an unmet need in the community for education about research studies and informing patients about the potential benefits of research studies. It has been an honor to help patients and get them in touch with the research staff to see if they qualify for any of our life saving trials.”

Mary is an advocate for Alzheimer’s research every day, when she encounters someone who may have been diagnosed with AD and through her efforts to fundraise each year to raise money for research. Through sharing her story in the community, she highlights the importance of being proactive once diagnosed and encourages people to participate in clinical trials. She has recommended our site to others for memory screens and for clinical trials.

“I was having issues with memory and thinking and I was not getting enough info from my doctor. My daughter- in-law found memory screening at Renstar and I went. As a result of that I signed up for a study and discovered through the PET scan that I do have Alzheimer’s. The most rewarding part of volunteering has been seeing the drug receive FDA approval and the hope for me and those in the future that have Alzheimer’s.”

Lori is such a joy, making every visit to the site brighter and a fun place where everyone feels welcome. Lori was caring for her father and controlling her early Alzheimer’s diagnosis at the same time, all while smiling brightly. She has been a light within the community to help share the message of early detection for Alzheimer’s and has always informed anyone she meets about our site and the services we offer.

“I joined because my grandmother was full blown Alzheimer's in the 80s but there was no way to diagnose her way back then, as they didn't have PET scans. Her grandma had angry outbursts and needed care from the family and in the late 90s, she couldn't remember anyone in the family within 10 years. The most rewarding part was being with the research team monthly and getting the help for me and others in the community. I really enjoyed being with the staff and the care they gave me.”

Lowry shares his knowledge of Alzheimer’s disease with everyone around him and is always looking for new ways to learn more about it by reading articles about recent developments. He has extensive pharmaceutical knowledge, which allows him to not only recognize the need to develop new therapies but also to share his expertise with others. He sets an excellent example for everyone by always putting out his best effort and never giving up as he navigates life with Alzheimer’s disease.

“As a pharmacist I have always been interested in Alzheimer's. My mother died of Alzheimer's, and my wife and I have participate in Alzheimer's walks since her diagnosis. I just want to help - before I started this clinical trial I gave platelets twice a month. I get a good feeling out of helping. The most rewarding aspect is the camaraderie with the doctors, nurses, and staff. Knowing we are working together as a team on a project that could help save the lives of thousands of older people.”

For ten years, Edith through ADRC has been a constant source of encouragement and hope for volunteers and caregivers. She shares success stories from ongoing research, highlighting advancements and potential breakthroughs. This positive outlook significantly improves the mental well-being of those facing challenges. By bridging the gap between research and the community, Edith empowers volunteers and caregivers with knowledge. This allows them to make informed decisions about their care and participate actively in their healthcare journey.

"My frequent statement, “If we don’t know you, we can’t help you,” opens the discussion of the critical need to increase awareness, educate and empower our community to understand and join clinical trials. Research allows us to know those for whom the study is designed. Research will lead us to intervention, treatment, prevention, and cure."

Joey is an incredible individual who has become a true inspiration to everyone at the clinic. Despite battling a debilitating disease, Joey remains incredibly positive and serves as a role model to other patients. His unwavering determination to maintain his independence is truly admirable. Not only does he handle his own difficulties with grace, but he also assists us in troubleshooting the electronic devices used in our study, showcasing his expertise as a technology director.. His dedication has not gone unnoticed, and he has become a role model for Charter and the entire research community.

“I was diagnosed with early Parkinsons Disease at a young age. Once getting over the initial shock of the news, I realized that I had to be proactive and not sit around feeling sorry for myself. I actively searched for clinical studies I believe that research is important because it’s the only way science will progress to find new cures. The most rewarding aspect is feeling that you are being proactive in the management of your disease. In addition, having the possibility that through my participation, I would be helping others with this condition.”

Heather is living with Dominantly Inherited Alzheimer’s Disease (DIAD) and shares her and her family member’s experiences dealing with DIAD and their plan for the future. She even shared her story with the Chicago Tribune. Heather goes above and beyond when it comes to volunteering in the trial. The trial she is in requires volunteers to change schedules, and with Heather working full-time and taking care of her family, she still makes this happen. Heather does it all and has been an extraordinary volunteer that should be admired by all.

“The most rewarding aspect of being involved in a clinical trial is knowing that by participating, I may help bring a fuller and happier future to the lives of my children, nieces, nephews and all the people impacted by Alzheimer’s disease. If my participation helps the world get closer to slowing the progression or even curing Alzheimer’s, that is reward in itself. Selfishly, most parents will do anything to protect their children and while at this point, I can’t change my children’s genetic status, I can help influence what their genetic status might mean for living life with less pain and suffering.”

Silvina is a retired teacher who has dedicated her life to helping others better themselves. She is always at the forefront, always asking, “How can I help?” Her compassion knows no bounds. During a recent community event, Silvina organized a caravan, ensuring individuals who couldn’t drive themselves could attend. But her support doesn’t stop there. She generously offers to transport patients to and from appointments, even going the extra mile by driving them to Neurologist appointments, which are over 50 miles away.

“The most rewarding aspect of being involved in a clinical trail is being prepared for myself and for others in my family. Becoming more knowledgeable and educated on options for not only myself but for others in my family.”

Joe is a remarkable individual who exemplifies selflessness and unwavering commitment in his quest to find current and better treatments for Parkinson’s. Joe actively participates in numerous charity events, speaking engagements, and foundation efforts focused on raising awareness and funds for Parkinson’s research. He willingly volunteers for clinical trials and actively collaborates with universities to advance better treatment and quality of life for people living with Parkinson’s.

Joe understands the importance that research plays and encourages others, especially those newly diagnosed, to get involved. His impact in his relentless pursuit of a world without Parkinson’s is awe-inspiring.

“It’s something I can do; it gives me a sense of control over something I can’t control. Participation makes me feel good about myself. Keeps me positive. Gives me hope. It gives me purpose. Keeps me active. If not me then who? I don’t intend to go through this journey without having some impact on the science of diagnosis, progression, and elimination of PD.”

Jonnie cares deeply about clinical research and knows that participating in these research trials will help to advance treatment and care in this field as it is desperately needed. Through her exemplary adherence to the study medication and with study visits, she is an outstanding participant and an absolute joy to have the pleasure of working with, as she brings optimism and a sense of humor to her visits.

“I joined because I have a family history of Alzheimer’s. By participating in this clinical trial I am hoping the results will lead to a medication that will cure or halt the progression so my children won’t have to worry about this debilitating disease as they age.”

Ron is an unwavering, dedicated, brave, compassionate, and determined man, which is made evident in his contributions when it comes to being an advocate of clinical trial research and it’s clinical use for the treatment of varying conditions. Ronald has been a vocal advocate for clinical research trial participation, with an emphasis on its clinical significance in enhancing the future of treatment options made available to others, who are also trying to navigate and seek solutions in this complex health system. Ron has poignantly shared his and Cheryl’s journey thus far, inviting everyone along to follow a blog that has subsequently become a book, “A Life Lived Through the Eyes of Alzheimer’s by Ronald Hogrefe.”

“After watching my wife care for her grandfather, then her mother, and now having Alzheimer’s herself, I focus on being the best caregiver I can be. Supporting her through her participation in clinical research trials is the only weapon I have to help fight this insidious disease. Seeing my wife’s commitment to research and watching her express her love and care for future generations is one of the most rewarding aspects of supporting her participation in clinical trials. Although she is the third generation with Alzheimer's, our prayer and hope is that she will be the last.”

Marilyn is the ultimate advocate as she has been the caregiver for her husband, who was diagnosed with Alzheimer’s disease. An author, she wrote a book, “He Said Good Morning,”about their journey. Her willingness to candidly discuss their lived experience has been inspirational.

Her positive attitude towards clinical trials is evident as she shares her story with support groups and friends. A strong advocate for the cure better treatments for Alzheimer’s, Marilyn is the ultimate role model for a caregiver, and an extraordinary care partner.

“I knew about AD trials since my husband was diagnosed in 2014, but I did not want to put him through anything invasive. When we moved to Florida, we attended a support group where a gentleman came and talked about research and Renstar. We decided to give it a try. We felt so comfortable at Renstar that we decided to move forward. I never regretted a day. We determined to stick it out until he could not do it anymore. It is rewarding to know that he participated in a trial that has brought us a little closer to a cure even though he did not benefit. I would do again if I had to. Every participant brings us a little closer to finding a cure for this disease.”

Martha Doran has selflessly and tirelessly advocated for her husband Joe. Martha and Joe are willing to participate in any study that will not only benefit Joe but others too. They moved to a different city so they could be closer to family but they still make it a point to be involved in research. Martha and Joe have tried to enroll in any research study they can, even when Joe isn’t eligible for one study they try out for another.

Martha also makes sure that Joe follows the 8 pillars AD as much as possible—Stay Active, Eat Well, Sleep Well, Exercise Your Brain, Connect with Friends and Family, Relax and Reduce Stress, Control Risk Factors and most of all—getting involved in research.

“Participating in the study was empowering and uplifting with the realization that we would be standing on the shoulders of others, with the same hope of bringing medicine to a better understanding and cure. It was an easy decision! Throughout our adventure, we never felt we were alone; the research team provided constant support, compassion and reassurance. The special bond we all formed continues to this day. The study has enriched our journey beyond our imagination, and we are grateful!”

Karin has been an active advocate for Alzheimer’s research, despite facing her own memory issues. Her commitment is truly remarkable, as she has not only enrolled in multiple studies but has also actively spread awareness about research at various events. Karin’s empathetic nature is evident through her volunteer work with the local art museum’s program for Alzheimer’s patients.

“Alzheimer's disease is a destructive disease that needs to be eradicated. I participate in the research study as my way of contributing to help erase Alzheimer's. I also try to spread the information about the value of volunteer studies. I want to emphasize that without these trials more families will have to endure this.”

When learning she had Alzheimer’s Disease, Patricia maintained a positive outlook. Her grandmother had Alzheimer’s and she remembers how emotional it can be for the patient and the caregiver as well. After her diagnosis, she decided to participate in a demanding study which involves required several onsite infusions and an amyloid PET scan in hopes to help future generations.  

Patricia educates the community by letting people know that being diagnosed is not the end. The team at Charter Research admires how Patricia is not letting this diagnosis control her life or actions.  

“The most rewarding aspect is knowing that I am assisting in the future of medicine. Knowing that maybe one day there will be an FDA approved, affordable drug that can help people. Being in a clinical trial is also very fun and personable. It's like visiting friends who care about you.”

Jorge is an exceptional participant in an early-onset Parkinson’s Disease trial over the past year and a half. As a physician, husband, and father, he has carved out time from his demanding schedule to contribute to research, even driving 50 miles round trip to each appointment!  Jorge is committed to raising awareness about the disease, and especially in representing the Hispanic community, traditionally an underrepresented community in research. 

Teri is an inspirational study partner, beautifully supporting her mother to thrive while living with Alzheimer’s Disease. Even with her full-time job, Teri prioritizes getting her to all study visits. Her patience with her mother is admirable.  

Beyond that, Teri raises awareness about clinical trials whether through social media, flyers, or word of mouth. Her activism eventually led to her creation of a coloring book for adults that is not only beneficial for her mom, but the aging community as well.   

“I am enjoying watching my Mom thrive! The last 10 years have been challenging for her and everything in her life has changed. I love that she is so passionate about doing everything she can to ensure that if we do start to show symptoms, there is a medical solution for us to turn to.“

Henrietta is a dedicated caregiver and study partner, participating in a study for over 18 months. In supporting her loved one, Luis, she has never once complained, and her commitment to him is beautiful. She stays on top of all appointments and the team at Kerwin Medical Center says that you can see and feel her love for Luis. 

“We hope our participation will help others. We also hope to achieve some success in curing this disease.”

Luis is a dedicated and selfless participant in clinical research, participating in a study for Alzheimer’s Disease for a year and a half. His positive attitude is contagious, and his willingness to work with the research team on whatever is needed is admirable. The team at Kerwin Medical Center enjoys every visit with him as he is always happy and smiling. 

“I feel honored and hope to find a cure and to help others.”

John has led a life of service to others, and continues in that role as he cares for his wife, Jackie, who is living with Alzheimer’s disease.  John previously worked as a Deacon in the Episcopal Diocese of Central Florida with a mission to reduce hunger. When Jackie was diagnosed with Alzheimer’s disease, his helping spirit supported Jackie in participating in a clinical trial to help their children and grandchildren.  

The Clincloud Team describes the power couple as a reminder of the potential of the human spirit. In between clinic visits, the couple would travel to Belize, using research funds, to help children in need. John and Jackie brought photos of the children learning about farming as they grew gardens in elementary school yards. John is an exemplary study partner and inspires all who meet him. 

“I support Jacki because she is my wife and her health concerns are also my concerns. It is important that I support her decision to be part of this trial. Being involved gives me an opportunity to be with her as she takes an active part of her future mental health. The most rewarding aspect of supporting her is that we are both taking a part not only in her potential improvement, but in the process of helping others by participating.”

Ann has been an exemplary participant for the AHEAD study. Prior to becoming a participant, Ann took on the role of caregiver for her brother who lives with Alzheimer’s. Ann has the phenomenal combination of perseverance and patience which is important when participating in a trial. She always maintains a positive attitude provide precise detail to aid in the study. The team at Cleveland Clinic Center for Brain Health describes her as an extraordinarily reliable and responsible participant. 

Ann has been an exemplary participant for the AHEAD study. Prior to becoming a participant, Ann took on the role of caregiver for her brother who lives with Alzheimer’s. Ann has the phenomenal combination of perseverance and patience which is important when participating in a trial. She always maintains a positive attitude provide precise detail to aid in the study. The team at Cleveland Clinic Center for Brain Health describes her as an extraordinarily reliable and responsible participant.

Josy is a dedicated caregiver to her mother who has been enrolled in two clinical trials. Josy is in the “sandwich generation” gracefully caring for her mother while also caring for her own children.  Her true compassion shines through and she is an incredible advocate for her mother and other trial participants. Josy goes beyond, providing insights to help the future for volunteers and their caregivers, understanding the needs of both. The team at Princeton Medical Institute admire her ability to selflessly care for her mother and future generations. 

“It is so rewarding to see my mom striving to improve her health and quality of life, and hopefully help others as a result. It has also been wonderful to see the commitment of the staff. Their patience and kindness have helped us feel safe and comfortable throughout this process. Participating in the trial gives us hope, which means everything.”

Vinnie is beloved at Progressive Medical Research and described as “a character,” dressing up when publicly speaking to others about becoming volunteers. His creativity lights up the room, and even though he lives thirty miles away, he has brought in multiple volunteers willing to aid in research. Vinnie is supportive of the need for research and a wonderful advocate who brings in so many others to help find a cure. 

“Progressive Medical Research doctors and the staff have been amazing to work with. They are kind and very generous to their patients. I have been on various studies over the years and I am treated as family. Chantelle is special delight as a coordinator.”

Sandy is an inspirational partner and caregiver to her husband who is living with Alzheimer’s Disease. With calming patience, she takes the time to explain everything to her husband John despite how many times he asks. She attends conferences and reads about new medications, clinical trials, and discoveries, ensuring she is well-versed in the latest news in the field. Her attitude is admirable, as she hopes that even if the trial does not help John, it will help future generations. 

“As a clinical nurse specialist, I researched Alzheimer's trials for my husband when he began having early onset symptoms. My husband is a PhD Toxicologist and has dedicated his life to research. By his participating in this trial, I have hope for future of my husband, my children, and those others for a life without Alzheimer's.”

Donna is a leader in educating people from diverse communities about aging and memory loss and the importance of clinical research. As a true advocate, Donna lends her voice and offers her experience to promote diversity in Alzheimer’s Disease research. The team at Mass General Brigham admires her dedication to helping in finding more volunteers to improve the future of clinical research. 

“The most rewarding aspect of being in a clinical trial is seeing if the medication works! If not for research, there would be no cures for anything.”

After Donald and his wife took care of his mother, who died from the disease, he knew that the best thing to do for himself was to get involved. He initially participated in the Biogen Engage study and has continued to enroll in sub-studies since. A retired lawyer, he has great passion in contributing to research.He did not lose hope when Aducanumab came under scrutiny, saying he would just screen for another study and participate in that one!

While the COVID-19 pandemic has made it more difficult, he has not stopped going to his appointments, and his loved ones have been sending him letters to keep him engaged.

“End Alzheimer’s disease! I would love to be part of finding a cure.”

The team at Great Lakes Clinical Trials describes Herald as having a contagious positive attitude. He brings a smile to every visit and exemplifies how to take on learning more about the diagnosis fearlessly and with gratitude. His participation helps deal with the day-to-day and overall frustrations that come when having the disease. But, no matter what, if Herald is in the position to help, he will!

Herald joined clinical trials because it is in his nature to want to learn, be involved, and help others.

Carol has emersed herself in the Parkinson’s community by leading Rock Steady Boxing classes, a nonprofit gym dedicated to helping those with PD improve their strength and quality of life. She truly understands the impact that PD has on an individual and a family, and her understanding and empathy give hope to the community. She also attends support groups, helps QUEST in recruitment and outreach, and the Older Persons Commission.

Carol is a mother of four and is all too aware of the importance of research and how it will affect future generations. She is incredibly supportive of her husband, her PD community, and team at QUEST!

“With my husband having PD, I've seen the difficulties people go through with this disease. I worry about my children and future generations - research gives hope for better treatments and a cure! I'm very supportive of disease modifying treatment studies and hope we can find better therapies and a cure.”

Barbara is a retired school principal and literacy coach and consultant. She has an eye for details, and she started to notice behavior changes in her husband, Neil. Neil researched Alzheimer’s clinical trials and started seeing the CART team at Brigham and Women’s with Barbara as his study partner.

Barbara is incredibly comfortable speaking to anyone about the importance of participating in Alzheimer’s clinical trials. The daughter of a pharmacist, she is a positive and helpful advocate to have around. The Collins’ respect for science and medicine makes them walking examples for what clinical research can do for individuals and for others.

“Love is the driving force, our mutual desire for my husband to nurture his incredible mind. A force, too, that embraces the opportunity to rally side-by-side for the common good. The clinical trial emboldens us to move forward with resilience, courage, and hope, one step at a time.“

As the world started shutting down due to COVID-19, Tom stepped up to enroll in a clinical trial at ADMDC at Rhode Island Hospital. He has faithfully attended all his appointments, even with a nearly 60-mile round trip, and has taken all the challenges offered in stride.

Tom has a can-do attitude that has kept the team at RIH focused on the importance of clinical trials during a pandemic where clinical trials were a focal point. He knows that a world where his grandchildren don’t have to worry about Alzheimer’s disease is worth every effort from him, other volunteers, and the RIH staff.

“My doctor confirmed my memory was getting worse and recommended an evaluation. That led to a diagnosis of early-stage Alzheimer's disease, so I eagerly enrolled in a clinical trial. The technicians are great, and my amazing wife has been fully supportive.”

Eugene has participated in 3 Parkinson’s trials over the last 3 years, some involving multiple visits that are over 9 hours. He has taken himself OFF medications to be able to participate causing great personal challenges.

Eugene leads by example and generously volunteers his own time as often as he can, even traveling 104 miles round trip to PMDC.

“I appreciate all that the team at VCU does for me. I am happy to help with research anytime.”

Barbara has been involved in research for over 7 years, and she is the only patient left in her OLE extension. As her disease progressed, her sister, June, took her in to live with her and is her study partner. Barbara travels monthly to Toronto Memory Program and considers it an honor to be a part of their family.

“It is an honour! I love to go to Toronto Memory Program.”

Sharon will attend any event that spreads the message of Parkinson’s disease research. She has spoken at over 20 QUEST events, webinars, Power Driven for PD, fundraisers, a Michael J. Fox Foundation charity gold event, a MJFF raffle, the MJFF Annual Parkinson’s Gala, the Recovery Project, news stations, Oakland University, YouTube Channels, and anything for Team Fox in the D, which she is the VP of.

Sharon has spent endless hours to advocate for and advance PD research. Her diagnosis is not a deterrent but a motivator for her work ethic.  

“I believe that I have the ability to be part of the solution in helping to accelerate a breakthrough in treatments for Parkinson's and to bring hope to others living with the disease. I also feel that research requires human participants, and that through trial and error, we'll achieve success.”

Gary is a study partner and caretaker who was not prepared for this journey but has compassionately excelled at it. He is vigilant in ensuring his study partner’s appointments, MRIs, and medications are all being maintained. He frequently informs other caregivers about local research opportunities and encourages them to be a part of cutting-edge research, which will ultimately be what cures Alzheimer’s disease.

“Being a part of finding a treatment or cure for this terrible, life changing disease would give this journey we are on some purpose. Contributors have the option to be a part of the solution or not. We choose to take an active role.”

Jack watched what Alzheimer’s disease did to his mother and he is determined to make sure it doesn’t happen to future generations. He convinced all 5 of his siblings to participate in Washington University’s Memory and Aging Project, which observes adult children who are presently unaffected by the disease. He travels 72 miles round trip 25 times a year (about twice a month) for his visits and doesn’t mind it one bit, as long as he helps increase awareness and helps find a cure for AD.

“Watching my mom deteriorate to a vegetative state and pass away because of this dreaded disease was a very impactful reason to get involved. I wanted to share my experiences through this study. I feel a sense of accomplishment in providing any form of information to work towards a cure.”

Having someone as positive and Joyful as Alice has helped BWH CART program immensely. She is a devoted research participant who gives research a good rap to those who are hesitant about getting involved, even speaking at several outreach events. Not only is she a participant, but she is a dedicated advocate for loved ones who are living with Alzheimer’s. Alice sees her research involvement as a positive addition to her life and sees everything as a lesson to be learned. She is passionate about her research community and is determined to be a part of a cure for AD.

"Joining A4 after moving to Cambridge from Italy has been essential to our well-being. (Her husband Boris is in LEARN.) It gave us an instant community and our involvement feels first, like a party. The appreciation events are wonderful and drop in groups include fascinating people who ask excellent questions.”

Peter is a study partner for a previously featured Citizen Scientist, Patty Barbato. Patty is 1 of 10 siblings, half who carry the genetic mutation for early onset Alzheimer’s disease. Their family decided to action against the disease and start an annual bike road known as “The Ride to End Alzheimer’s”. They have testified in front of congress, appeared on TV, allowed scientists to bank their DNA for research, and have worked tirelessly to educate people about early onset AD and clinical trial enrollment. Peter is entirely supportive of Patty and her family, and they have all dedicated their lives to increase awareness, money and quicken research.

“My wife Patty is one of 10 siblings. Her mother developed Alzheimer’s in her 40s and doctors told us that half of the children would die before age 58. To make a difference for future generations, we joined the BIOCARD Study, the Pittsburgh Compound, DIAN, Merck and the Tau Trial.”

Wayne and his wife travel 200 miles round trip to Roper St. Francis 12 times a year for his study, and they arrive with smiles on their faces and baked goods in their hands! They’ve been doing this for 4 years, that’s 192-240 hours of travel! For them, it’s part of their duty to mankind to leave it better than they found it. Wayne and his wife are committed to furthering research and increasing awareness. Several of their friends have been evaluated by Roper St Francis since their arrival at the clinic. The team considers them part of their family now and is grateful for their involvement.

“I watched Alzheimer’s destroy my father’s mind and, eventually, body. We volunteered to be part of clinical trials to save another family in the future from experiencing this heartbreak. We were raised to believe it’s our duty to leave the world a better place through service to mankind.”

Sharon has been a committed research participant at Roper St. Francis for over 10 years! The team there describes her as a member of their family. She offers constant support and insight into her experiences with Alzheimer’s research. She stays on top of community and current events involving research, shares information with others, and informs the team of different organizations that can help further their mission. She calls her reason for involvement selfish but helping further research for future generations is anything but!

“I’m an Alzheimer’s research study volunteer for a selfish reason: I’ve seen what Alzheimer’s does to people and it ain’t pretty. It’s a lengthy, humiliating, miserable way to die. I’m genetically at risk, and my children are, too. A cure will never be found without research study volunteers.”

Participating in research is a part of who Phil Cunningham is. He was raised in a progressive household and when his parents passed, both of their bodies had been donated to medical schools. As a veteran, he knew it was part of his civic duty to get involved.

Since then, Phil is one of CART’s first Research Ambassadors, and is entirely committed to doing whatever he can to spread the message about the importance of getting involved in memory research. He has spoken at several Massachusetts Councils on Aging (MCOA) gatherings, visits a retirement community every Thursday to be a resource for memory concerns, and is a member of an online community of A4 study type participants. Phil is a respected member of his trial community and is dedicated to do whatever he can to hasten a cure for Alzheimer’s.

“I participate for both selfish and politically correct reasons.”

Bobby’s wife Carol was in an accident in her late 50s and didn’t know where she was. Realizing her mother had been diagnosed with dementia in her 80s, they reached out to a local center in their hometown of Springfield, Massachusetts. Wanting something more, Bobby and Carol traveled 200 miles round trip to Brigham and Women’s CART to get involved in research.

As Carol’s study partner, Bobby has taken an active role in not only her care, but in his community. He speaks at outreach events, his church, and to anyone who will listen. His faith and his family are his biggest motivator, saying participating in research has validated their religious beliefs.

"I will go to the moon to stay in the game. We do this for our children and granddaughters."

Cheryle was interviewed from her chair at Toronto Memory Program’s research center by CTV Network’s Pauline Chan and resonated with hearts across Canada. She spoke candidly about her experience with Alzheimer’s clinical trials, about her own memory loss and how she is helping others by helping herself. Cheryle has helped reduce the stigma surrounding Alzheimer’s disease and the fear of clinical trials. She has encouraged others to seek out opportunities and to not ignore their memory symptoms. The team at Toronto Memory describes her as an exemplary patient and advocate with an honest viewpoint filled with hope and a call to action.  

“Initially, I investigated an Alzheimer’s trial for personal reason – memory lapses. Being relatively young, I didn’t want it to be true, but I felt it was better to know. Now, having worked with the dedicated team at Toronto Memory Program, my goals have become more altruistic…and here I am!”

Robert and Gwenyth are a husband and wife team dedicated to lessening the impact of Alzheimer’s disease on future generations. They travel 161 miles (260km) round trip to make their trial appointments, and they say it’s well worth it. They have shared her personal experience with Alzheimer’s disease and clinical trials on the local and national level, including the Toronto Memory Program by CTV Your Morning show. Robert and Gwenyth will talk about Alzheimer’s clinical trials to anyone that will listen. They reassure audiences that participating in a trial is a valuable, uplifting and supportive experience. They are fully committed to lessening the impact of Alzheimer’s on future generations.  

“We joined the trial following the suggestion of our GP that we might benefit from participation. Our involvement has provided us with encouragement from the support given by those conducting the trial.”

Barbara got involved in Alzheimer’s clinical trials and research after helping care for a friend’s parent with Lewy Body Dementia. She is a pillar in her local dementia community, doing whatever she can to reach out and support those who need it. She is eager and enthusiastic to participate in any trial she can. She is currently on her third! Barbara’s motivations are like many other trial patients. Not only does she want to help others in the future, but she wants to make sure members of her family benefit from her participation long after she’s gone. 

“I wanted to help find a cure or at least something that could help someone in the future, maybe even my great granddaughter’s children. I decided that I would see if I could volunteer. As it turned out, I did qualify and have now participated in at least 3 studies.”

Ida believes that contributing to society is a necessity of every person, and she applies that to Alzheimer’s clinical trials as well. She has a history of the disease in her family and, after taking care of her mother, she knew she had to do something about it. Ida is passionate about her clinical trial participation, encouraging others to do so as well. She knows that although research has come far, the more people who participate in trials, the quicker that will be. She has participated in two studies already and has no plans on stopping anytime soon.  

“Through all of these studies we are identifying more and more tools to deal with Alzheimer’s disease. We’re close to a breakthrough, but we need to study it more now. This is how I can contribute.”

Patty has not let her Alzheimer’s diagnosis stop her or her family from doing whatever the can to make Alzheimer’s research a priority. Before even knowing she had the disease she enrolled in an Alzheimer’s clinical trial after caring for her mother who died from the disease, whose twin sister also had it. Of her 10 siblings, 5 were found to carry the genetic mutation for early onset Alzheimer’s. Patty has only used this as fuel for her fire. She has testified in front of Congress, appeared on TV, and started an annual bike ride fundraiser, “The Ride to End Alzheimer’s”. She has dedicated her life to awareness and finding a cure, and has even allowed scientists to bank her DNA in the interest of research.  

“I joined a trial before knowing I had AD and cared for my mother. She and her identical twin both died of early onset, and another sibling died of late onset. I am one of ten; five of whom carried the genetic mutation for early onset AD.”

Helen was reluctant to take part of a clinical trial but after watching her mother and sister struggle with Alzheimer’s disease, she realized that participating in a trial was the next step for her. She has quickly become a favorite at the Center for Alzheimer’s Research and Treatment at Brigham and Women’s Hospital in Boston, understanding the hesitation people face with trial involvement. Helen is described as an, “ardent advocate for research who humanizes the experience”. Her passion for AD clinical trials is evident, as she speaks at BWH outreach events, participates in a forum about AD findings and research, and has interviewed with Boston Globe, CBS Nightly News, Neurology Now, Psychology Magazine and Prevention Magazine to shed light about the importance of removing the stigma and fear around clinical trials. Helen’s contribution to Alzheimer’s research doesn’t stop with her; she even convinced her sister to donate her brain to science.  

“My mother and sister both had Alzheimer's disease. Not having a diagnosis, myself, I thought participating in a clinical trial was the next step.”

Debby O’Brien cared for both her parents while they had dementia. After they passed, she explored getting involved in Alzheimer’s research to ensure that families in the future would be spared what happened to her family. She responded to a TV advertisement for a study at Rhode Island Hospital, and after passing a screening process, was admitted as a participant for a study led by Dr. Brian Ott. Nowadays, Debby hosts an annual pig roast at her pasture in western Rhode Island for 200 Navy veterans in honor of her late father, who was a Navy captain. She extols the virtues of Dr. Ott and his team to everyone who will listen. 

“Thank God I ended up with Dr. Ott!” she said. “I have so much respect for him and the other researchers. There’s never a clinical feel about the lab at all - I view them as my friends that I get to see every month. They make me feel wanted and appreciated.” Debby travels 137 miles roundtrip to make her monthly visits, but she finds the experience to be well worth the trip.

When Anne Gruettner’s father passed away as a result of Alzheimer’s, it didn’t take long for Anne to realize what might be in store for her. While her fears were confirmed, her Alzheimer’s diagnosis from Dr. Brian Appleby came with an invitation to join the Study of Nasal Insulin to Fight Forgetfulness (SNIFF). “I jumped at the fact that I could stay alive longer,” Anne said.?“The team at UH became like a family to me. I thought, maybe I would be able to help people in the future.” Anne was faithfully accompanied to her trial visits by her wife Jan, who served as her study partner for the duration of the trial. Anne went into the trial with no expectations and counts it among the most fulfilling experiences of my life, in large part because of the trial team’s kindness and support. “I couldn’t get over how helpful, sympathetic, and encouraging they were,” she said. Her experience has motivated her to apply for a second trial and extoll the benefits of participation to her friends. 

“To anyone unsure about enrolling in an Alzheimer’s study, I would say, what do you have to lose? It’s better for you, and better for those who would come after you.”

Watching her mother decline to the point where she could no longer feed herself inspired Arleen Twist to help Alzheimer’s researchers find a cure in any way she could. Since her retirement in 2006, she has participated in four studies at the University Hospitals Brain Health and Memory Center. During the A4 study, she faithfully attended every scheduled trial visit for five years, not missing sessions even when she had pneumonia. “I build my life around these studies,” said Arleen. “It has been the most delightful experience that I can remember in recent times, the research team has become like a family to me.” She often brings reading material to her visits, but rarely gets to it because she prefers to chat with the University Hospitals staff. 

“I’m happy to see that people my age are less afraid than they used to be to get checked for dementia,” she reflected. “That’s why I tell as many people as I can that there are options out there, including clinical trials.”

The Gallogly family had a suspicion no family wishes to have: that one of their family members may have Alzheimer’s. After David Gallogly retired from his accounting position at State Street Bank, he continued to work during tax season. “Dad would do taxes every winter, which required him to be recertified every year,” said his daughter Katie. “When he didn’t pass the recertification exam one year, he finally accepted, ‘You guys are right. I can realize this now.’” Katie heard about Dr. Brian Ott at Providence’s Rhode Island Hospital, from one of her coworkers whose mother Dr. Ott had evaluated for Alzheimer’s. Katie and her father made their way to Dr. Ott where David received a comprehensive neurological assessment. It revealed that David had Alzheimer’s and was a prime candidate for the Aware Study clinical trial. “Ever since then, it’s been amazing,” Katie beamed. “My dad’s completely accepted his condition and wants to be of service however he can.”  

David enjoys going to the Center with his daughter Katie and visiting Dr. Ott to receive infusions. “Everyone has been so friendly. It’s nice,” Katie confessed. “It’s like we have our little dates, and it’s sweet.”

When Trish Brown first visited a doctor at University of Kansas Med West, she had no idea she was about to begin a years-long journey into Alzheimer’s research. She took a memory test on her doctor’s advice, after which she was invited to join a trial at the University of Kansas Alzheimer’s Disease Center (KU ADC). “I immediately jumped at the opportunity,” Trish says. “I thought that if I participate in these trials, just think how fortunate I would be. I can help myself and other people at the same time. It was an easy decision.” As a KU ADC Ambassador, Trish is a tireless advocate for research, bringing her friends to talks and recruitment events.  

“I thought that if I participate in these trials, just think how fortunate I would be. I can help myself and other people at the same time. It was an easy decision.”

Several years ago, Nancy Curran began to notice problems with her memory. Her primary care physician suggested that she see Dr. Brian Ott, MD, director of Rhode Island Hospital’s Alzheimer’s Disease and Memory Disorders Center. Dr. Ott gave Nancy the diagnosis: She had a buildup of amyloid protein in her brain, a visible marker of Alzheimer’s?disease. Her first question, Nancy said, was “Is there any research?” A retired occupational therapist and daughter of a physician, Nancy explained that the practice of medicine has been a constant theme in her life, and she values research highly. Nancy, with her husband, Mike, as her study partner, proved to be a good candidate for the Stage 3 trial of a drug called aducanumab. Nancy wears a bracelet of purple beads – the color of Alzheimer’s awareness – linked with a silver medallion etched with the word “hope.” A dot of gold on the medallion represents her loving caregiver, her husband. “This bracelet says it all,” she said. “Hope is my mantra.” 

“I want to scream it from the mountaintops and tell everyone there is hope! Even three years ago, there wouldn’t be anything to help me. I feel if everyone participated in research, we’d be a lot further along.”

When Pam Moorby found herself losing her train of thought in her everyday life more than a decade ago, she assumed that the stress of her job was getting to her head. Pam’s quest for treatment took on renewed urgency when she was let go from her nursing job due to her inability to perform necessary tasks. Her search took her to Rhode Island Hospital, where a PET scan revealed that not only did Pam have Alzheimer’s, but the amount of built-up tau protein in her brain meant she was functioning far better than she should have been. “That’s when I began the process of volunteering for trials.” In the three years since her diagnosis, Pam has adopted Dr. Brian Ott—the lead researcher for her trial—and his team as her “second family.”  

“I tell people my story to make them less scared of research,” she explained. “When I hear someone complaining of memory problems, I refer them to Rhode Island Hospital. I tell them the team will be honest and caring with them because they are.”

When Mike Russo saw a TV advertisement in 2013 for a Rhode Island Hospital Alzheimer’s study, he jumped at the chance to join. His father had lost a battle with Alzheimer’s, and his brother had received a diagnosis of his own around the same time. Although Mike did not have a greater inherent risk for Alzheimer’s, his resolve to join an Alzheimer’s study did not waver, and he joined the Longitudinal Evaluation of Alymloid Risk and Neurodegeneration (LEARN) study. 

“Sticking my head in the sand wasn’t an option, given my family history, but I can certainly understand why others might be hesitant to get their memory screened,” he said. “To them I would say, ‘What do you have to lose?’”

Joyce and Kermit Roberg have known each other since they were in 6^th grade and have been married for the past 57 years. Through the ups and downs of more than a half century spent together, Joyce’s Alzheimer’s has been the greatest challenge the couple has faced together. Joyce participated in the TRAILBLAZER study, which required her to receive monthly infusions. “I wasn’t thrilled at the prospect of getting infusions at first,” Joyce confessed, “but Dr. [Daniel] Hernandez and [Research Manager] Jeanette Wilson make me feel very comfortable. They encouraged me to ask in-depth questions of my doctor, which I might not have done before.” 

She is grateful for her involvement, “because now I have personal friends I can talk to whenever I want to talk, or I’m feeling bad, or my husband isn’t around. It’s been a gamechanger.”

After a painful experience with her parents’ Alzheimer’s, Connie Lesko found herself feeling heartbroken for the Alzheimer’s patients who don’t have close family to advocate for them. She shifted her marketing career to focus on the senior living industry, where she has worked for the past fifteen years – including multiple stints at facilities that focus on Alzheimer’s patients. Connie is involved with the Byrd Alzheimer’s Research Center and Institute and chaired a major fundraising event. She is passionate about prevention, finding a cure, and a medication that can effectively treat Alzheimer’s symptoms, and knows that clinical trials are the key to finding answers. 

Through her relationship with the Institute, Connie met then Assistant Director for Clinical Research, Jill Smith. “Once I turned 65, I immediately called Jill and said, ‘Find me a study!’”

Barbara (Barb) is the 2019 Citizen Scientist Catalyst Award honoree. She received an Alzheimer’s diagnosis several years ago at Rhode Island Hospital (RIH) even though her primary care physician had told her she had nothing to worry about. Her connection with RIH continues today as a clinical trial participant in one of their studies. Barb has been involved in fitness classes for decades, so it was a natural fit for her and a friend to co-create a memory fitness class program. Her business partner, Elaine Sewatsky, is also her research study partner. Of Barb’s decision to seek a second opinion at Rhode Island Hospital, she says, “I’m glad I begged for help after my first physician told me not to worry. Every second you lose matters.” Barb resides in Wakefield, RI.

“This study is like a lottery ticket, you never know if this might be the winner.”

Rochelle is the 2019 Citizen Scientist Cornerstone Award honoree. Her involvement with Alzheimer’s clinical trials at the University Hospitals Brain Health and Memory Center in Beachwood, OH spans 18 years and counting. She has been a participant or research study partner in seven trials and is a member of the University Hospitals Minority Outreach Board, encouraging African Americans and Latinos—who are disproportionately affected by Alzheimer’s but underrepresented in research—to get involved. “Drugs that work for white men may not work as well for black women,” Long says. “More of us in the African-American community need to be involved in research to determine the reasons for that.” Rochelle resides in Shaker Heights, OH.

“Alzheimer’s can isolate you, which is why getting out and sharingyour experience is so important. You have to do something to help somebody else.”

Richard is the 2019 Citizen Scientist Champion Award honoree. His passion for Alzheimer’s disease research advocacy stems from having lost two of his grandparents to Alzheimer’s and having been the primary caregiver to his uncle and his mother, both of whom died from the disease. “Caring for my family members taught me how little the health system knows about caring for individuals with dementia,” Apple says. “If I happen to be in a study that’s successful, I’ll be in on the ground floor of the treatment. It would be very positive to postpone or avoid what I went through with my family.” He enrolled in his first trial at Great Lakes Clinical Trials in Chicago, IL immediately after he retired and has participated in four studies overall. Richard resides in Rockford, IL.

“If you participate in a successful Alzheimer’s trial, you are likely to get the drug sooner, even if youare on placebo during the study. It would be very positive to postpone or avoid what I went throughwith my family.”

After watching her Aunt Mary suffer from Alzheimer’s disease, and being diagnosed with the disease herself, Kaye began to seek opportunities to learn more about dementia through support groups and educational meetings within her community. At one of the local seminars she attended, the Intercoastal Medical Group Research Manager, Jeannette Wilson, made a presentation about Alzheimer’s clinical studies; less than a year later Kaye was enrolled in the DAYBREAK study. Kaye had been making monthly visits to Intercoastal for one and a half years when that study ended. She immediately decided to be screened to participate in TRAILBLAZER.

Thanks to the support of Bob, her husband and study partner, as well as friends and family, Kaye has faced her diagnosis with alacrity and a determination to help others. "I’m comforted by knowing that I’m not the only one going through this, and I even convinced a member of my extended family to get screened for a study," she said, "It’s satisfying to help find a cure in any way I can."

Barbara was a caregiver for her husband, Harvey, who was diagnosed with Alzheimer’s at the age of 56. She was his caregiver for 6½ years before he passed away due to complications of Alzheimer’s. They were married for 38 years and have 3 daughters and 7 grandchildren.

"I am committed to doing everything I can to help find a cure or stop the progression and ultimately eradicate the illness so that no family faces hardships and devastation this illness can cause. I know that as I age, my chances of getting the disease increase and I’m concerned for my children and future heirs. I encourage people to consider volunteering for a clinical research program. My dream is that they will eradicate the disease completely."

Daisy is a caregiver, clinical trial participant and advocate for the LatinosAgainstAlzheimer’s Network. She has been a caregiver for her mother, Sonia, who was diagnosed with early onset Alzheimer’s in 2013 at age 55. In 2014, Daisy tested positive for the gene linked to early onset Alzheimer’s disease. As one of the few Latinas enrolled in an Alzheimer’s clinical trial, Daisy is committed to raising awareness of the importance of Alzheimer’s research and funding.

"It's so important for Latinos and other minorities to engage in clinical trial research. We need to make sure that our communities have a voice in the research process and we have to take responsibility for our families and for ourselves."

An award-winning investigative reporter and author, Greg was diagnosed with early onset Alzheimer’s in 2009. He has been writing, chronicling, and talking about the process ever since. Greg’s book, On Pluto: Inside the Mind of Alzheimer’s , has been described as “heartbreaking, defiant, profound” and a new edition was just released this summer. Greg has served on the national Alzheimer’s Association Early Onset Advisory Group, is a patient advocate for the Cure Alzheimer’s Fund of Boston, and is a board member of the distinguished UsAgainstAlzheimers in Washington, D.C.

"I carry the Alzheimer’s marker gene APOE-4. I know the frontline well: Alzheimer’s stole my maternal grandfather, my mother, my paternal uncle, and before my father’s death, he also was diagnosed with dementia. After a visit to my pity party, I got off the mat to dance with Alzheimer’s, strategies for living with the disease in faith, hope, and humor."

In 2002, after her mother was diagnosed with Early Onset Alzheimer’s Disease, Karen shifted her focus to raising awareness and fundraising for the Alzheimer’s Association. She has been an active board member of the Chicago Rita Hayworth Gala Committee and co-chaired the 2014 Chicago Gala. In 2015, Karen joined the UsAgainstAlzheimer’s board and is focusing her efforts on advocating for increased focus on Alzheimer’s prevention efforts.

"As there is no treatment or cure for Alzheimer’s disease at this time, we need to focus on studying family members of patients and tracking the changes at the earliest stages. We need to push for greater urgency to defeat this devastating disease."

Karen began to question her own chances of developing Alzheimer’s while caring for her mother who was living with the disease. Knowing that she was searching for answers, a friend told Karen about Alzheimer’s clinical research that she was participating in at Progressive Medical Research in Port Orange, FL. Karen immediately reached out to the site and began the screening process to become a volunteer trial participant. She recently organized opportunities for groups of her friends to ask questions of Progressive’s own Dr. Marshall concerning Alzheimer’s disease, dementia, and clinical trial participation. She even convinced twelve of her friends to get the cheek swab test at that event. With the bigger picture in mind, Karen is committed to continuing to push for an Alzheimer’s cure.

"To anyone on the fence about joining an Alzheimer’s trial, I would say look at the bigger picture. The benefits of participating go far beyond any medication you receive. We’re doing this for future generations. Besides, if you can do something to stop your own memory loss, why wouldn’t you do it?"