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2025
Catalyst Award · Banner Alzheimer's Institute · Phoenix, Arizona
Ann Taylor
Ann found herself diagnosed with early on-set Alzheimer's disease when she was in her late 50s. She and her husband, Russell, searched the internet for information on "what to expect next" and much of the literature was focused on an audience aged 70-90. It highlighted assisted living and hospice options, rather than new, or soon-to-be, retirees.
They decided that they would become the people they were looking for and started a YouTube channel about life with early on-set AD. Ann documents her life, what it's like to live with a disease like Alzheimer's, Russell's perspective, how they stay active, and what it's like to participate in a clinical trial.
They share the wins and losses with their online community but remain overwhelmingly positive, leaning on their faith, family, and love for one another.
Ann has no plans to stop participating in research and her mantra "slow, stop, or reverse" is what keeps her motivated for the next one.
We share our journey and are very positive people. It's encouraging going to our research site because they're just as positive and supportive.
Champion Award · Barrow Neurological Institute · Phoenix, Arizona
James Render
Jim is a retired scientist, with a career in veterinary pathology. After being diagnosed with Lewy Body Dementia (LBD) he did not hesitate to get involved. He knows that the more people who volunteer the quicker the world will have treatments and cures for diseases and disorders.
Since being diagnosed, Jim has participated in no less than five clinical trials and has never turned down an opportunity to get involved. Research is a family affair, with his wife, Anne, and their daughter participating in trials related to epilepsy. He has also spoken on a panel at the 2024 Lewy Body Dementia Association and is involved in LBD support groups.
There isn't anything Jim isn't willing to do to move science forward. Besides his participation giving HIM purpose, the Barrow Neurological Institute team says his resilience feed their staff to keep going on the bad days.
There are no two people alike, so more people need to volunteer. Participating in research has given me purpose and the desire to keep going.
Collaborator Award · Premiere Research Institute · West Palm Beach, Florida
Brian Allas
After 30 years together, Brian's husband, Neil, was diagnosed with Alzheimer's disease. They live a vibrant, active, full life - they wondered how could this be? They spent a few days being shocked and sad, then decided they were going to fight this as much as they could.
Brian started by finding out everything he could about the disease, got a second opinion, and discovered Premiere Research Institute was conducting clinical trials. The desire to participate was, initially, self-focused. Like many, Brian wanted to delay the disease for Neil. As the trial went on, and the more they got to know the team at PRI, the reason for participating became altruistic. They have befriended their research team and know they are helping develop options for the AD community, and increasing their quality of life.
Since they've been involved, Brian has become Neil's advocate. He maintains full-time employment on top of being a caregiver, study partner, yoga teacher, and friend to many.
Brian says the work is hard but worth it because they are one couple of millions who are experiencing the same thing. That is the most gratifying part of their participation.
We are just one couple who are affected by this out of millions. If the trial isn't a cure but something that will enhance the quality of life of someone living with Alzheimer's, then why not?
Cornerstone Award · Advocate Health Care · Park Ridge, Illinois
Scott Brechtel
Scott has a multi-generational family history of Alzheimer's disease in his family. When one of his children started noticing that he kept repeating questions, Scott's wife, Dawn, told him he needed to go to the doctor. They asked his primary care physician multiple times for a cognitive exam and when they finally received one, the results were what Dawn had expected: a particular form of genetic early on-set Alzheimer's disease.
With a career spent working for Miller-Coors, Scott decided then to make life changes like cutting out alcohol, eating a well-balanced diet, and getting involved in research. They drive 95 miles round-trip to Advocate Health Care to participate in a research trial. He is also involved in the organization Youngtimers, where other people living with early on-set Alzheimer's can find community. In his involvement, he has encouraged other people to volunteer for research.
Participating in research was an easy choice for Scott. He has children and grandchildren he wants to spend time with and help ensure they do not have to worry about developing Alzheimer's.
Scott knows that he may not benefit directly from his participation but he knows he's a part of something bigger than himself and he cannot be more grateful for the team he has surrounding him.
Don't give up, don't be afraid. We need your help. If people don't step up to get involved in these trials, we're never going to find a cure.
Cultivator Award · K2 Medical Research · Maitland, Florida
Deborah Allen & The Wayne Densch YMCA
Deb Allen has been at the YMCA for decades and is known by many as "Ms. Deb". She is a pillar at the Wayne Densch branch, designing programs that are senior-focused like the Alzheimer's 5k Walk with the Forever Young Senior group.
The passion for dementia awareness is what led K2 Medical Research to partner with Deb. Several of the programs she manages center maintaining a healthy lifestyle for older adults, particularly those from the Black and Brown communities as they are 1.5-2x as likely to develop Alzheimer's disease. Deb has integrated GAP's Acti-v8 Your Brain (A8YB) program into her community with pickleball sessions, steel pan music lessons, yoga sessions, healthy food demonstrations, and introduced research be welcoming the K2 team into these events.
The members of the YMCA can now recognize K2 and know they are not there to recruit new trial volunteers, but to strengthen the community like Deb has done. By teaming up, K2, Deb, and the Wayne Densch YMCA have no only made research interesting, but accessible.
K2 is a resource and every time we reach out it's a step closer to being more educated and understanding about aging. It reminds our community that there are things they can do, that they have a chance.
Cultivator Award · Axiom Brain Health · Tampa, Florida
Hyde Park United Methodist Church Caregiver Sanctuary
The Caregiver Sanctuary at Hyde Park United Methodist church started when one of the church members became a caregiver to a family member and was emotional, exhausted, and lonely. They came to the church for guidance and comfort, when it was realized that a large number of their members were caregivers in some capacity.
The Sanctuary meets monthly and has expanded to other areas of health. A lot of what the members would say about their experience and their loved one dealt with their memory, and so Hyde Park connected with Axiom Brain Health. Now, they host health fairs and brain health seminars that provides free memory screenings.
In partnership with Axiom, the Sanctuary is not only a safe place for caregivers but a place where they can learn more about Alzheimer's and what resources are available to the Tampa-community.
Working with Axiom Brain Health has lowered the level of fear for our members. Receiving a diagnosis is scary but there's empowerment, community, and possibility in a diagnosis.
2024
Catalyst Award · University of Rochester Medical Center AD-CARE · Rochester, New York
Dr. Cynthia Huling Hummel
In the early 2000s when she was 49, Cynthia was studying for doctorate and realized she was not remembering things like she used to. A longtime pastor, she was forgetting parishioners’ names or what she was preaching about. After going to the doctor for over 8 years looking for answers, she was diagnosed with Alzheimer’s disease. Devastated, she turned to the Alzheimer’s Association where she took an eight week class for people living with dementia, and left with a new resolve.
Cynthia now participates in research, traveling over 300 miles round trip to participate at the University of Rochester Medical Center AD-CARE program. She says it was the easiest decision for her, as her family has emphasized the importance of volunteering since she was a child. Her volunteerism goes above and beyond what most would do as she has served on several panels and councils as an advisor, co-authored multiple publications in peer reviewed scientific journals on study participation and participant rights, keynote speaks on the importance of research, received the NYS Governor Award for exemplary service, appointed by Paul Harris Fellow by Rotary Int., which picked as an exhibitor in the National Gallery in Stockholm Sweden, and is the first person living with dementia to be on the National Advisory Council on Aging (NACA).
Cynthia 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.
Talking about Alzheimer's is my ministry. But beyond that, I want to make a difference.
Champion Award · Clinical Research Professionals · Chesterfield, Missouri
Mary Sullivan
In 2020, Mary tested positive for COVID-19. Months later she went back to the doctor after ‘feeling funny’. After a lot of testing, the doctors diagnosed her with ‘long COVID’, a chronic condition that can occur months after recovering from the initial infection.
A self-described ‘science nerd’, Mary did not believe that, though similar her symptoms were not the same as long COVID. She eventually saw an ad for an Alzheimer’s disease clinical trial where you would receive a no-cost PET scan as a participant. The PET scan revealed that she was in the very early stages of developing Alzheimer’s, so early that the doctors said that it would’ve taken years for her to know her diagnosis if it wasn’t for her PET scan and advocating for herself. As a retired, long-time nurse, she was familiar with hospital systems and the need for research participants.
Since then, Mary has been an advocate for education and awareness wherever they will hear her. She 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. She has even presented on the topic of dementia/Alzheimer’s in a virtual setting to educate a group of medical students and nurses from Nigeria, where the rate of dementia is rising. 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.
I believe in science, and I believe in contributing to science. The only way we're going to find a cure is by actively participating in research.
Cornerstone Award · Kawartha Centre · Peterborough, Ontario, Canada
John Peters
With a career in research and ensuring the protection of historically and environmentally significant land threatened by urban and industrial development, signing himself up for a clinical trial was easy for John. After his wife and him noticed some ‘failure’ starting to take place, they jumped at the opportunity to get involved at Kawartha Centre.
A diagnosis has not slowed John down from doing the things he loves. He continues to be involved in research like breeding bird surveys and marsh monitoring, a curler, a reader, an avid cross-country skier, and certified wine judge! He credits his participation with continuing to do the things he loves, saying it’s been lifesaving.
As if he didn’t know before, John stresses the vital importance of getting involved in research and moving science forward. He knows firsthand how long it can take, how small the changes in a research study or project can be, and he wants to be part of finding those little things.
John cannot thank the team at Kawartha Centre enough for what they’ve done for him, saying ‘they were like sunshine who took the veil of gray clouds away’.
I can't imagine where I'd be if I didn't get involved in research. It's been lifesaving. I'm happy to do whatever can be done to help. I will give back forever.
Collaborator Award · Conquest Research · Winter Park, Florida
Ronald Hogrefe
Ron watched his wife, Cheryl, be a caregiver for her grandfather and mother for 30 years, and credits her for teaching him how to be a good caregiver to her now that she is living with Alzheimer’s disease. He is unwavering, dedicated, compassionate, and vulnerable, all of which are evident in his advocacy for clinical trial participation.
Ron is vocal about the need for volunteers, the rising cost of treating neurodegenerative disease, and the complexities of hospital systems. When beginning his journey as a caregiver, Ron was looking for resources. He says the change in lifestyle is very daunting and, though he knew what to expect after helping care for his in-laws, you still need help sometimes. He found the ones that helped the most were ones that were written by people who were, or are, on the same journey as him. This inspired him to start his blog and turn it into a book “A Life Lived Through the Eyes of Alzheimer’s”.
Ron seeks to be part of the change in research, saying that while their story seems sad it has prepared them and made the journey easier. The difficulties do not discourage him, but rather motivate him to keep doing what he can for Sheryl and others.
Research is a tool, an amazing tool, and the only one we have to try to attack the disease. What have you got to lose?
Cultivator Award · Butler Hospital’s Memory & Aging Program · Providence, Rhode Island
Progreso Latino
Progreso Latino is a non-profit organization serving the immigrant and Latino community in Providence, Rhode Island. They provide an array of programs and services with an overall mission to improve the quality of life for their community members, with an emphasis on helping them keep their independence for as long as they can and intergenerational collaboration.
Several years ago, Butler Hospital’s Memory and Aging Program (MAP), received a grant to help increase diversity for a study they were participating in. Having met Progreso Latino at a health fair, they reached out to set up a ‘Brain Room’ at their facility. This started their relationship with Dilenia Cruz from Progreso Latino.
Together, Butler and Dilenia focus on making sure their community members know that Butler is a resource there to help them. They believe they aren’t there just to help seniors, but the whole family. Their biggest challenge has been destigmatizing dementia, which is often seen as shameful. With dementia rates higher in Hispanic and Latino Americans than white Americans, the ‘Brain Room’ serves as a private, quiet space to talk about health concerns and options.
The progress has been slow but noticeable, with Dilenia saying ‘No information is bad if you can use it. The information from Butler gives us a commitment to continue to work. And our hope is to get a cure sooner.”
Working with Butler opens the door to our community to tell them 'Here, there is possibility. We can construct a cure together.'
Cultivator Award · Washington, D.C.
Allison Signorelli
Allison’s relationship with the Global Alzheimer’s Platform Foundation spans over a decade. She likes to say, “I was there when GAP was born.” After spending over 10 years involved in Alzheimer’s disease research with UsAgainstAlzheimer’s (UsA2), she started experiencing muscle spasms. Over the course of four years, these spasms progressed into limb numbness and full body tremors. At nearly 48 years old, Allie was diagnosed with Early Onset Parkinson’s disease.
Since that diagnosis, she has thrown herself into every aspect of advocacy she can. She has raised over $12,000 for Parkinson’s research, she is involved in a study with the Michael J. Foxx Foundation, she has a social media community of over 62,000 comprised of people living with a movement disorder, caregivers, patients, advocates, family members, and people looking to learn more from someone they can relate to. She uses her following to interview public figures like Katie Couric, subject-matter-experts like movement disorder specialist Dr. Michael Okun, and U.S. politicians like Gus Bilirakis, all of which helped pass the National Plan to End Parkinson’s (the first-ever federal legislation dedicated to ending PD).
Allie’s experience working in the Alzheimer’s disease space has prepared her for her diagnosis and what comes with it. She says, “I do feel like I am uniquely prepared…I think it’s a natural progression from what I was doing professionally, it’s an extension.” And her diagnosis has not stopped her from being a wife, mother, family member, and friend. She embodies the three pillars of the Cultivator award with a smile on her face.
I think it's vital that all of the neurodegenerative diseases come together because if you find the cure for Alzheimer’s, you will unlock the cure for Parkinson's, and you will unlock the cure for so many other diseases.
2023
Cornerstone Award · Charter Research · Winter Park, Florida
Sheila Keiner
Sheila didn’t tell anyone outside her immediate family about her Parkinson’s diagnosis for years, as she was scared that others would change their opinions of her and see her differently. After ‘coming out’ to raise money for an annual Parkinson’s walk, people did start to see her differently, but not in the way she thought. Sheila decided early after her diagnosis that she was going to do everything she could to delay and degeneration. She boxes, she does Pilates, she is a mentor, she is an active mother, and splits time between Nashville, Tennessee and Winter Park, Florida without missing a study visit. Her friends and family had no idea that was she diagnosed and saw a woman of strength and courage, not someone sick or weak.
Sheila’s calls Charter Research a ‘special place’ and is beloved by all the staff there, several of whom teared up when telling GAP her story. They see someone as dedicated to progressing research as them, as Sheila has created ‘pouches’ to hold her infusion medication without inhibiting her daily life and fashion styles. Her ‘research’ is shared with the Charter team and sent to study sponsors to make the medication easier to use and more accessible. The Charter team says that her positivity and mentorship to other volunteers contributes not just to Parkinson’s research but the community at large, and they wish they had more patients like her.
The possibility that all of us can be helped is my driving force. I would do anything to progress the research.
Collaborator Award · Visionary Investigators Network · Miami, Florida
Joanne Bridges
For Joanne, her husband Jerome’s Alzheimer’s diagnosis was simply another part of their journey together. The future might look a little different than they thought but it was still going to be something they did together.
Joanne’s mission now, besides being a caretaker for Jerome, is to ‘open the door to hope’ for other families, especially those in Black and Brown communities who know there is a history of mistreatment in medicine for people who look like them. She sees and understands their hesitations and worries but connects them with the team at Visionary Investigators Network (VIN) because of the help they provide. She makes sure that she’s providing education and resources, and credits the VIN team with their professionalism and dedication for taking it the rest of the way.
Being involved in research has made life with Alzheimer’s ‘better than [she] thought it would be’. Because of research, Joanne says her being a caregiver is easy. She was shocked to hear of her nomination, and then selection, for the Citizen Scientist Awards® as she doesn’t think she’s done anything special. She says that she does what any caregiver, any study partner, and person who loves their spouse would do.
We had nothing to lose and everything to gain from being involved in a study. It’s the first step in the journey and it’s an easy decision made on optimism and realism.
Champion Award · Syrentis Clinical Research · Santa Ana, California
Jeannie Weiss
Jeannie found Syrentis Clinical Research on her own after suffering from two strokes and hearing that Alzheimer’s research was an option for her. She typed ‘Alzheimer’s research near me’ into Google and three nearby clinics came up. She called two who didn’t answer, but Syrentis did.
Since then, Jeannie has been actively involved in several trials. She has had many days where she’s spent over eight hours at the clinic completing infusions, cognitive exams, and brain scans. She doesn’t consider these days poorly spent; she greatly enjoys spending time with the Syrentis team and, as a professional baker, often brings in baked goods for the staff. Syrentis considers Jeannie and her husband, Jeff, as part of the family and they were even invited to Jeannie’s birthday party in September.
As a member of the Orange County Mustang Club for over 30 years, raising money and awareness for charities throughout Orange County, California, there was never any doubt that she would volunteer for Alzheimer’s research if she could. Though Jeannie says she said she ‘felted cheated’ after receiving her diagnosis, she now takes it in stride and says that she has never changed her mind about being a trial and that everyone ay Syrentis is rooting for their volunteers.
Never once have I ever changed my mind about being in a clinical trial. Everyone there is rooting for you, and everything being done benefits you.
Catalyst Award · CenExel iResearch Atlanta · Decatur, Georgia
Rod Barber
After experiencing some lapses in memory and knowing that he had a family history of dementia, Rod decided to get involved in research and has been actively enrolled in several trials since 2019.
The team at iResearch Atlanta defines Rod’s recruitment efforts as ‘old school’. He takes their research site’s business cards, study brochures, and pamphlets from newspaper clippings around the community with him so he’s always prepared to talk about Alzheimer’s research. iResearch says that Rod has given a face to research in their community and helps make sure that people who aren’t able to navigate online platforms are still informed of their options.
With a large, blended family, Rod is hopeful that his participation will help him and future generations, and that they know research is out there and that they can be a part of it.
I committed to Alzheimer’s research because it is one of the most important fields right now and I wanted to be a part of it.
2022
Cornerstone Award · EvergreenHealth Research Program · Seattle, WA
Eric Singsaas
Eric has been going to EvergreenHealth Research Program for several years, participating in all types of studies he is eligible for. Eric has a selfless attitude about his diagnosis, and the team at EvergreenHealth describes him as someone who wants to be the change for others. He volunteers for any outreach event they ask, will share his story openly, and said he would donate his organs to research if needed.
Eric went to the doctor for what he thought was an essential tremor. After receiving a diagnosis of Parkinson's disease, he decided to do something about it.
His family was originally hesitant to start participating in trials but, for Eric, it is how he feels hope. He says he has never been treated as a 'subject', always as a person, and that participating in research as given him a sense of purpose.
This isn't a death sentence; this is a life sentence. If we get enough people involved in research, we can figure out how to slow it and stop it.
Collaborator Award · Cleveland Clinic Center for Brain Health · Cleveland, OH
Joe Knap
When Jenny was diagnosed with Mild Cognitive Impairment (MCI), Joe saw research involvement as another opportunity for them to reinforce their commitment to each other. They have been a partnership for over 40 years, and this is simply an additional chance for them to come together as a team.
For Joe, Jenny's involvement in research gives him reassurance, as they are regularly meeting with doctors. He helps maintain her social life, physical activity, and eating a healthy diet. His involvement with Jenny's research has enabled her participation in several studies, including the recently approved Aduhelm (also known as Aducanumab). They were also featured in the Washington Post encouraging others to get involved in research.
You didn't choose Alzheimer's but how you respond to it is your choice
Champion Award · University of Kansas Alzheimer's Disease Research Center · Kansas City, KS
Bob Deady
Bob attended an informational session on Alzheimer's research over a decade ago and has been an active research participant at the University of Kansas Alzheimer's Disease Research Center sense. He regularly shares his passion for research with anyone who will listen, was a member of the KU ADRC Ambassadors group whose role was to support and share outreach events, has given countless presentations, contributed to videos and publications for AD, and has directly recruited at least 25 participants into research studies.
The team at KU ADRC describes Bob as a true champion for research with his countless hours of volunteerism and that their efforts would not be the same without his dedication. Bob says he is simply doing his part to find a cure for his children and grandchildren.
The shortage of volunteers is a real hinderance. Scientists cannot make progress without help. We need more volunteers.
Catalyst Award · Clinic Center for Brain Health · Cleveland, OH
Jenny Knap
As a retired social worker and family therapist, Jenny knew that when she was diagnosed with Mild Cognitive Impairment (MCI) that she wanted to get involved in research to help others. She has been involved in several studies, including the recently approved Aduhelm (also known as Aducanumab) study from Biogen, and she hopes that data will be useful in other trials. Jenny says that any challenges she faces come from her day-to-day life and that being involved in research reassures her that she can handle anything.
The team at Cleveland Clinic Brain Health Center describes her as remarkable positive and inspiring. She and her husband Joe are always willing to share their story and the importance of getting involved in research. They say they have gained confidence through their participation and found lifelong friends from the Cleveland Clinic team.
I can spur people on to know it's not the end of your life, you have a lot more to live.
2021
Cornerstone Award · Toronto Memory Program · Toronto, Ontario, Canada
Anthony 'Tony' Ng
Anthony 'Tony' Ng saw the signs of dementia in his father years ago and, when he started to experience similar things, he went to the Toronto Memory Program(TMP) for a memory screen.
According to the team from TMP, Tony has been a model volunteer since 2016. He doesn't miss appointments, he keeps his mind and body active, and is well supported by his wife, Kathie. He continues to love learning and playing music, as well as practice speaking other languages. The TMP team adores Tony and Kathie, and are grateful for participants like them.
There's a practical benefit to being involved in a trial; not just for the future but myself. It makes me realize that we all need to move forward together.
Collaborator Award · Raleigh Neurology Associates · Raleigh, NC
Carol Petersen
Carol has been a study partner for her husband, John, since 2019 when he was enrolled in the GRADUATE (Roche) study. Since then, John has experienced a significant cognitive decline and Carol's role has changed from wife to caregiver. She has taken on this new role with tenacity and grace and has taken every measure to make sure John does not miss a visit.
John was a career scientist and always believed in supporting scientific investigation, which is why Carol understands the importance of clinical trials. She is knowledgeable and engaged in the process, diligent in communicating her observations of John to the Raleigh Neurology Associates team, and extremely supportive of him during the last 2 years. Both John and Carol know their participation will benefit generations to come.
Alzheimer's is very slow out of the box to get help. My hope is that some of these new drugs actually start to work. We do what we need to do.
Champion Award · QUEST Research Institute · Farmington Hills, MI
Dan McEachin
Dan has been a research volunteer at many different sites: 4 at QUEST Research Institute, 1 at Northwestern University, 5 at University of Michigan, and 4 online studies. He is a co-facilitator of the Parkinson's Disease Self Group at the Michigan Parkinson Foundation (MPF) and was selected to be a "Hero for PD" at their walkathon. He was a delegate at the World Parkinson's Congress in Japan, submitted a video to the National Institute of Neurological Disorders and Strokes, and is on the Advisory Committee of the Udall Center at the University of Michigan (where he has been a trial participant).
Dan has spoken at several MPF events in-person and online, as well events for Rock Steady Boxing, the Michael J. Fox Foundation in the D, and Detroit News. He was also an advocate for QUEST at the Van Andel Symposium last September.
Dan has a family history of Parkinson's and Alzheimer's disease, which gives him a special appreciation for neurological research. His unmatched passion to learn and help advance research is an inspiration to the team at Quest, and a huge morale booster for himself.
In order to be a helpful volunteer, it's necessary to accept things that may be outside your comfort zone, and not only volunteer for what is easy or convenient but volunteer for what needs to be done.
Catalyst Award · Progressive Medical Research · Port Orange, FL
Sheila Minor
Sheila's mother passed from Alzheimer's disease, and she wanted to do her part for herself and others. She and her husband, Rick, are a part of Progressive Medical Research's Vietnam Veterans outreach group. Many of their volunteers have come from Sheila's recruitment efforts. Unfortunately, during the COVID-19 pandemic the program was halted. That didn't stop Sheila; she would bring guests to Progressive Medical Research's "lunch and learns" when she could to help destigmatize Alzheimer's and study participation.
Sheila takes her referrals very seriously, and everyone that she's recommended has gets through the pre-screening and qualifies for a clinical trial before a blood test or Alzheimer's testing.
The team at Progressive Medical highly values Sheila and her efforts. They say she is always kind and has a positive attitude, and they need people like her who see the value in participating in clinical trials and impart that encouragement to others.
I think people need to get more involved in medical research and not be afraid of it. I want to be an advocate.
2020
Cornerstone Award · Washington University in St. Louis: Knight Alzheimer Disease Research Center (ADRC) · St. Louis, MO
Dr. Collins Lewis
Collins has a history of Alzheimer’s disease on both sides of his family. And with African Americans having a larger predisposition to the disease, he knew he needed to contribute to finding a cure. Since his involvement with the Knight Alzheimer’s Clinical Trial Unit at Washington University in St. Louis, he has participated in three clinical trials. Collins is a member of the African American Advisory Board at KATCU and serves as an ambassador and liaison for the Knight Alzheimer’s Disease and Research Center, building strong individual and local partnerships to increase participation.
Dr. Lewis decided to volunteer for Alzheimer’s research at the Knight Alzheimer’s Disease Research Center because of his family’s history with the disease, and because Black people are twice as likely as white people to be diagnosed. At KADRC, he is a member of the African American Advisory Board, which counsels the KADRC research team concerning cultural sensitivity and appropriate outreach strategies to encourage active, long-term participation of African Americans in memory and aging studies.
Many African Americans are reluctant to join studies because of the history of racism in medicine and medical research. I want people to understand that research today is not the way it used to be. In order to develop treatments for Alzheimer’s that work for everybody, scientists need a broad spectrum of people in clinical trials – not just African Americans, but Hispanic and Asian and indigenous people as well.
Collaborator Award · JEM Research Institute · Lake Worth, FL
Rep. Matt Willhite
State Representative Matt Willhite (D-86) has gone above and beyond as a study partner, someone who supports an individual in a study. He is a State of Florida Representative and sponsored a bill aimed at strengthening Alzheimer’s care services, which was signed into law by the Governor on June 18, 2020. He is also a firefighter and has been described as a “superhero” by the JEM Research team. Matt is a caregiver to his study partner, his community and the entire state of Florida.
Rep. Willhite and his mother were inspired to participate clinical trials at JEM because of their medical backgrounds as a paramedic and a nurse, respectively. They both understood the profound importance of research and innovation in medicine, and the crucial role clinical trial volunteers play in advancing science.
Joining an Alzheimer’s clinical trial is like buying a lottery ticket, but instead of hoping only you win, you hope that your contribution also will help your children, your grandchildren, and everyone that comes after you.
Champion Award · Roper St. Francis Research and Innovation Center · Charleston, SC
Deborah Whelan
Deborah was diagnosed with early-onset Alzheimer’s disease at 64 years old, and she’s turned it into an opportunity to help others. She has participated in 4 clinical trials and is an active advocate for women with Alzheimer’s, who are twice as likely to develop the disease as men. Deborah has spoken at the Alzheimer’s Association Walk to End Alzheimer’s, has been interviewed by local news, and advocated on Capitol Hill for more research funding and programs. She has done whatever it takes to increase awareness locally and nationally, and says she will participate in research for as long as she can.
Whelan has been an advocate in the press, in her community, and on Capitol Hill for Alzheimer’s awareness and clinical trials. While living in Kentucky, she shared her story with her representatives during an Alzheimer’s forum, including Senator Mitch McConnell, Senator Rand Paul, Representative John Yarmuth, and Representative Andy Barr. Most recently, she was the keynote speaker at Myrtle Beach’s Walk to End Alzheimer’s.
Deb passed away in December 2022 and GAP will continue to amplify Deb’s message, encouraging others to get involved in research so that future generations will not have to worry about Alzheimer's disease and to remind people that there is always something you can do to make a difference.
There are not currently any treatments for me but I want to help my daughters and my grandson and other people. I want to make as many people as possible aware that there is something you can do to help eradicate this disease.
Catalyst Award · Center for Alzheimer Research and Treatment at Brigham and Women’s Hospital · Boston, MA
Dennis Chan
When Dennis’ wife Angie started displaying dementia symptoms, they contacted their local Alzheimer’s Association chapter and found out about enrolling in clinical trials. Now, Dennis and Angie are actively involved in spreading the word about clinical trials. They tell their friends, speak about it at senior center events, and want to create a group in Westford, Massachusetts with Dementia Friends. Dennis even attended the Alzheimer’s Clinical Trials Consortium (ACTC) meeting in San Diego earlier this year. He is motivated by his family, who encouraged him to DO something, and those he meets in his advocacy.
As a clinical trial volunteer, Dennis Chan has spoken at several CART outreach events to educate potential volunteers about research opportunities. His commitment to research is furthered by being a member of the Alzheimer’s Clinical Trial Consortium Advisory Board and he represented CART at their annual meeting in San Diego last year.
When I first started looking into clinical trials, one of my children challenged me to do something instead of just raising money.
2019
Cornerstone Award · Brain Health & Memory Center at University Hospitals Cleveland Medical Center · Beachwood, OH
Rochelle Long
Alzheimer’s disease has been an integral part of Rochelle Long’s family history. After her mother’s third relative was diagnosed, Rochelle convinced her mother to get tested. Her mother was diagnosed with Alzheimer’s and learned about clinical trial opportunities. When her mother enrolled in a study, Rochelle became her research study partner. She was also a study partner for her aunt for years and couldn’t wait to become a volunteer herself. Dr. Alan Lerner, Director of the University Hospitals of Cleveland Brain Health and Memory Center, was aware of Rochelle’s keen interest in research even though she has no symptoms of Alzheimer’s and was pleased when she was finally able to meet all of the criteria to volunteer as a study participant.
Her involvement with trials at University Hospital—as a study partner, trial participant, and member of the University Hospital Minority Outreach Board—spans 18 years and counting. Since her initial involvement, she has only taken one vacation, choosing to devote all of her other paid vacation days to clinical trials outreach, doctor’s appointments, and care.
In early May, Rochelle was honored at a University Hospitals ceremony for her extraordinary efforts to support Alzheimer’s research and trial participation.
The ceremony reaffirmed her tireless commitment to Alzheimer’s advocacy, particularly in the African American community. She is sensitive to the historical and cultural reasons that African Americans are less likely to volunteer for clinical trials despite being disproportionately affected by Alzheimer’s. But, as she says, “[African Americans] are the number one population affected by this disease. We can’t only look to the past – we’ll never find a cure unless people are willing to step up and do something that helps others.” Moreover, “Drugs that work for white men may not work as well for black women. More of us need to be involved in research to determine the reasons for that.”
According to Rochelle, one of the most powerful aspects of clinical trials is the sense of community and purpose they foster. “Whether you’re a caregiver or trial participant, this disease makes you feel isolated. But being involved in research at UH for the past 18 years has made me realize I’m not alone. There is an amazing support community out there, if only people would take advantage of it.”
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?
Champion Award · Great Lakes Clinical Trials · Chicago, IL
Richard Apple
To say Alzheimer’s disease runs in Richard Apple’s family is an understatement. He lost both of his grandmothers, his mother, and an uncle to the disease. In fact, for the Apple family, Alzheimer’s appears to stretch back nearly 200 years; a diary by an ancestor who came to the United States in the 1830s indicates the author’s mother may have had dementia.
Richard remembers his Grandmother Apple as a confident, strong woman before she started experiencing Alzheimer’s symptoms. She was well educated and active in her community. “When she moved to nursing care, it was very sad for me,” he says. “I told myself I would do what I could to fight Alzheimer’s when I got a chance.”
Richard’s uncle was next. Serving as his uncle’s caregiver taught Richard how little the health care system knew about caring for individuals with dementia. Richard’s mom was also diagnosed with Alzheimer’s disease. She had been the picture of health, walking five miles a day well into her 70s, but her diagnosis and disease progression necessitated in-home care and eventually assisted living.
Richard resolved to do whatever he could to help other families navigate the difficult experience of caring for a loved one with Alzheimer’s, so he went to work for the Alzheimer’s Association as a care navigator. That role sparked an interest in clinical trials and research, planting the seeds for Richard’s eventual trial participation at Great Lakes Clinical Trials once he retired.
“First, I was screened for participation,” Richard explained. “When they called me to come back in, I had some thoughts about not going, but then I reaffirmed in my mind that I owed it to struggling families to participate in the research.” Based on the study screening tests, Richard’s doctor informed him he had elevated amyloid levels in brain putting him at high risk for developing the symptoms of Alzheimer’s. “I thought, thank goodness I decided to stick through the screening – I always feel like it’s better to know than not know,” he remembers. Richard is resolved to contribute to research, and he is optimistic about the future: “I feel like we’re on the cusp of a breakthrough. Of course, nobody knows which [study] will be the breakthrough, which is why we need as many participants as possible.”
Richard has been struck by the kindness, professionalism, and camaraderie of the team at Great Lakes Clinical Trials, who have given him a greater picture of his overall health: “A couple of times they found my blood pressure was high and worked with me to have that evaluated by my general practitioner. I went on blood pressure meds and now I’m in the normal range.”
His positive experience at Great Lakes inspired Richard to encourage everyone he knows to get involved in a clinical trial: “If you participate, you are likely to get the drug sooner, even if you are on placebo during the study. It would be very positive to postpone or avoid what I went through with my family. It gives you a sense of purpose.” For now, Richard concentrates on staying optimistic, healthy living, and living in the moment, especially with his grandkids.
If you participate in a successful Alzheimer’s trial, you are likely to get the drug sooner, even if you are on placebo during the study. It would be very positive to postpone or avoid what I went through with my family.
Catalyst Award · The Alzheimer’s Disease and Memory Disorders Center at Rhode Island Hospital · Providence, RI
Barbara Silva
Barbara (Barb) Silva noticed her father’s mental decline over the course of four annual visits to him in Hawaii. “He was a cribbage champion, we used to play all the time. When he started asking me, ‘What do you see?’ and ‘How many points do you count?’ during games, I knew something was wrong,” she recalls. Barb also noticed his driving getting significantly worse. The changes were jarring as she hadn’t heard anything from her mother about his condition. Barb knew her father’s symptoms couldn’t be ignored any longer when he left the house without warning and drove erratically around the neighborhood, hitting curbs and fences.
Her father’s experience was foremost in Barb’s mind when she started experiencing dementia-like symptoms of her own. She consulted her physician right away, who declared that she didn’t have anything to worry about. Barb wasn’t so sure – she got a second opinion and was referred to Dr. Brian Ott at Rhode Island Hospital, who confirmed her suspicion that her dementia was caused by Alzheimer’s disease.
“I was instantly impressed with Dr. Ott,” Barb remembers. “He and his staff are warm, informative, and effective.” She immediately volunteered for a clinical trial and met all enrollment criteria.
Barb hasn’t let her Alzheimer’s diagnosis get in the way of her living an active, full life. 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 (Mega Memory). Her business partner in this endeavor, Elaine Sewatsky, is also her research study partner. Barb continues to teach a fitness class for people age 50 years and older as well as being an active participant in the Mega-Memory class several times a week. Barb states, “In memory fitness, it forces me to remember one thing before moving on to the next thing, and to keep the entire pattern in mind while I’m doing it. It’s done wonders for my mental health.”
Dr. Ott was impressed with Barb’s determination to proactively seek help for her memory loss, and Barb credits that determination with the full life she leads in spite of her diagnosis. “I’m glad I begged for help after my first physician told me not to worry. Every second you lose matters.”
Barb hopes her story can help reduce the stigma around Alzheimer’s. “Watching my mom and dad refuse to talk about Alzheimer’s was painful, and it certainly didn’t help my father. I decided I couldn’t afford to react to my condition the same way, and I highly encourage others to get involved with research.”
This study is like a lottery ticket, you never know if this might be the winner.
