The Global Alzheimer’s Platform Foundation’s® (GAP) 2022 Citizen Scientist Award recipients include the first husband-and-wife volunteer team, an Alzheimer’s advocate who champions participation in prevention studies, and a Parkinson’s disease clinical trial participant who volunteers in research studies to find hope after diagnosis
WASHINGTON, DC (Feb. 22, 2023) — Today, the Global Alzheimer’s Platform Foundation (GAP) proudly announced the recipients of the 2022 National Citizen Scientist Awards®.
GAP’s Citizen Scientist Awards acknowledge the contributions of individuals who make a difference by volunteering in clinical trials for neurodegenerative diseases.
This year’s award recipients include, for the first time, a husband-and-wife duo, an Alzheimer’s prevention study participant, and a clinical trial advocate who is living with Parkinson’s disease.
“Considering the toll of Alzheimer’s and Parkinson’s on millions of Americans and those who care about them, we must continue to advance research more quickly to discover new life-improving treatments. But we can’t get there without clinical research, and research doesn’t happen without volunteers,” said GAP President John Dwyer.
“The dedication of every person who participates in clinical research is remarkable, and I am especially privileged to recognize these individuals. Because of their generous participation, we will continue to advance our understanding of how to treat — and one day cure — neurodegenerative diseases,” he added.
Recruiting and maintaining clinical trial participants continues to be a major obstacle to developing new therapies and treatments for those diagnosed with Alzheimer’s and Parkinson’s disease. Approximately 80 to 90 percent of clinical trials are delayed due to a lack of participants.
The 2022 National Citizen Scientist Award honorees make critical contributions to the wide body of clinical research being done nationwide, and they reflect the different roles that people can play in finding better therapies for neurodegenerative diseases like Alzheimer’s and Parkinson’s.
“A common thread across our 2022 Citizen Scientist Award honorees is a shared passion for advocacy and research that has led them to play a significant role in the fight against these diseases,” said GAP Vice President for Trial Recruitment and Study Solutions Leigh Zisko.
GAP supports more than 100 research sites in the U.S. and worldwide who are part of the GAP-Net clinical research network. Together, they form a network of independent and academic clinical research sites that are committed to accelerating research to benefit people living with Alzheimer’s and Parkinson’s disease.
GAP-Net research sites nominated dozens of deserving volunteers for the 2022 Citizen Scientist Awards, and they were celebrated locally along with other volunteers who participate in clinical research.
The 2022 Citizen Scientist Award Elevated Recipients
Jenny and Joseph “Joe” Knap — Cleveland, OH
- Jenny received the National Citizen Scientist Catalyst Award®, which is given to a clinical trial volunteer who brings about change or encourages others in clinical trial participation. She saidthat she enrolled in a clinical trial to “spur people to know that [Alzheimer’s is] not the end of your life, that you have a lot more to live.” As someone who has been diagnosed with mild cognitive impairment (MCI) and has a high risk for developing Alzheimer’s disease, she said she knows that she may not be around to see a cure for Alzheimer’s, but that she will be part of the reason a cure is found. Jenny formerly worked as a social worker and was in an investigational drug trial for Biogen’s aducanumab, which was approved by the FDA in 2022 as Aduhelm.
- Joe is the recipient of the National Citizen Scientist Collaborator Award®, which is given to a study partner who supports a participant in a clinical trial. He said, “You don’t choose Alzheimer’s disease, but you choose how to respond to it.” He is a living example of how to take on the role of caregiver in stride. Joe has provided unwavering support for his wife during her journey with MCI by helping her continue an active lifestyle and live as healthfully as possible.
Bob Deady — Kansas City, MO
- Bob received the National Citizen Scientist Champion Award®. Bobhas been a champion of clinical trial participation for a decade, recruiting others to volunteer for clinical trials, and working to share information about the important clinical trial research being conducted at the nearby University of Kansas Alzheimer’s Disease Research Center. While Bob does not have Alzheimer’s disease, he began participating in prevention studies in 2014. The longevity of his trial participation provides researchers with insight into the normal process of aging as compared to aging with Alzheimer’s disease. Bob said that being involved in clinical research connects him with “the greatest brains in the country” and notes that “they can’t make progress without help.”
Eric Singsaas — Seattle, WA
- Eric received the National Citizen Scientist Cornerstone Award® recipient, which recognizes a clinical trial volunteer who has made extraordinary efforts to support local research and participation in trials. From the time that Eric was diagnosed with Parkinson’s disease several years ago, he has made it his mission to “try to make [tomorrow] a little bit better.” His family says that his participation in clinical research has made him more hopeful and energetic and has changed his outlook on his diagnosis. Eric has participated in several clinical trials and shares his experience with others to encourage their participation. He said, “I want this disease to go away, and we have the capability to make it go away.”
For more information about the Citizen Scientist Awards® and to see the other honorees, visit: https://globalalzplatform.org/awards/.
To learn about nearby clinical research studies for Parkinson’s and Alzheimer’s disease, visit: https://globalalzplatform.org/home/.
For immediate release:
About the Global Alzheimer’s Platform Foundation (GAP)
The nonprofit Global Alzheimer’s Platform Foundation® was founded to speed the delivery of Alzheimer’s treatments with a commitment to promoting diversity in clinical research, as well as lowering the cost and duration of clinical trials to ensure that no one is left behind. As part of its mission, GAP supports more than 100 clinical research sites worldwide through study start up and recruitment activities, promoting diversity in research studies, and giving attention to the citizen scientists who make research possible.
About National Citizen Scientist Awards
The annual Citizen Scientist Awards® are one way that GAP recognizes the time, passion and dedication of the clinical trial participants who are helping to finding a new treatment, prevention or cure for Alzheimer’s and Parkinson’s diseases through their volunteerism.