Trial volunteer awards go to Parkinson’s, Alzheimer’s patients
GAP Citizen Scientist awards honor individuals' contributions to research
A research advocate diagnosed with Parkinson’s disease and a former nurse with Alzheimer’s disease were among recipients of volunteer awards from the Global Alzheimer’s Platform Foundation (GAP).
GAP’s Citizen Scientist Awards acknowledge the contributions of volunteers in clinical trials for neurodegenerative diseases. Each year, GAP’s network of research sites, GAP-Net, nominates trial volunteers, who share their journeys to encourage others in their communities to get involved in research.
“We are grateful for our study participants whose invaluable contributions are essential to informing [brain and spinal cord] science and developing therapies and cures for neurodegenerative diseases,” John Dwyer, president of the GAP Foundation, said in a foundation press release. “Citizen Scientists’ leadership in our field allows us to accelerate the research so desperately needed to find an end to these cruel diseases.”
The development of new therapies and treatments for neurodegenerative conditions such as Parkinson’s and Alzheimer’s relies on clinical trials that frequently have difficulty recruiting and retaining participants. According to the GAP foundation, 80% of Parkinson’s trials are delayed because they don’t have enough participants.
GAP-Net includes more than 100 private and academic clinical research sites North America and Europe dedicated to accelerating the development of treatments for Parkinson’s and Alzheimer’s. The network is also focused on increasing diversity in clinical trials and lowering trials’ costs and duration to increase trial participation.
Advocating for Alzheimer’s research, then diagnosed with Parkinson’s
Six people and one organization were selected for volunteer awards from the more than 140 trial volunteers who were nominated across North America for their contributions to clinical research.
Allison Signorelli, from Washington, received the Citizen Scientist Cultivator Award, which honors people or organizations for engaging, educating, and empowering community members to learn more about Parkinson’s and Alzheimer’s trials.
Signorelli had been promoting Alzheimer’s research, including through GAP, for more than a decade when she was diagnosed with early-onset Parkinson’s at age 47. Since her diagnosis, she has become a strong advocate of Parkinson’s research, raising funds, talking to policymakers, launching a social media community to help those affected by Parkinson’s, and participating in a study with The Michael J. Fox Foundation for Parkinson’s Research, according to GAP.
Signorelli said her experience in Alzheimer’s advocacy helped prepare her for her Parkinson’s diagnosis. “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,” she said.
A second Citizen Scientist Cultivator Award was granted to Progreso Latino, a nonprofit organization in Providence, Rhode Island. The organization works with Butler Hospital’s Memory and Aging Program, a GAP-Net site, to engage, educate, and empower members of the Latin community to learn more about Parkinson’s and Alzheimer’s research.
Mary Sullivan, a former nurse from Chesterfield, Missouri, who has Alzheimer’s, was given the Citizen Scientist Champion Award recognizing a trial participant who advocates for trial participation in the community. Sullivan has done so internationally as well, helping to educate a group of medical students and nurses from Nigeria, GAP said.
The Citizen Scientist Catalyst Award, which honors trial participants who encourage clinical trial participation through new and creative approaches, was granted to Cynthia Huling Hummel, a former pastor from Rochester, New York, who was diagnosed with Alzheimer’s. She has served as a keynote speaker and panelist at workshops and meetings, and has coauthored several studies in scientific journals on study participation and participant rights, and impact of dementia.
Alzheimer’s patient John Peters of Peterborough, Ontario, received the Citizen Scientist Cornerstone Award, which recognizes clinical trial participants who personally made great efforts to participate in studies and support local research.
The Citizen Scientist Collaborator Award, which honors a partner of someone with Alzheimer’s or dementia who is or was enrolled in a trial, went to Ronald Hogrefe of Winter Park, Florida. Hogrefe advocates for his wife with Alzheimer’s and for clinical trial participation, and shared their experiences in a blog that became a book, GAP said.
“The 2024 elevated Citizen Scientist honorees are representatives for all the nominees who make invaluable contributions to the wide body of clinical research being done around the world, and they reflect the different roles that people can play in finding better therapies for neurodegenerative diseases like Alzheimer’s and Parkinson’s,” the foundation said.
This year’s honorees were announced at the 2025 GAP-Net Site Optimization Conference, held Feb. 26-28 in Miami.
About the Author
