Citizen Scientist Awards

2024 Honoree

Nominated by
University of Rochester Medical Center AD-CARE
Rochester, New York

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."

2024 Honoree

Nominated by
Clinical Research Professionals
Chesterfield, Missouri

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."

2024 Honoree

Nominated by
Kawartha Centre
Peterborough, Ontario, Canada

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."

2024 Honoree

Nominated by
Conquest Research
Winter Park, Florida

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?"

2024 Honoree

Nominated by
Butler Hospital’s Memory & Aging Program
Providence, Rhode Island

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.'"

2024 Honoree

Washington, D.C.

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."