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?"