Celebrating our 2022 Honorees

Citizen Scientists® Are the Missing Piece of the Alzheimer's and Parkinson's Puzzles

The concept behind the Citizen Scientist Awards® is simple – we can't find cures for Alzheimer's and Parkinson's without clinical trial participants. Ninety percent of Alzheimer's, and 80% of Parkinson's studies, are delayed due to insufficient recruitment, making research participants the key piece of the puzzle. We hope their stories inspire you or someone you know to contact a research site to ask about research opportunities.

Many Stories, One Common Purpose

In 2022, GAP-Net sites across North America nominated Alzheimer's and, for the first time, Parkinson's study participants for the Citizen Scientist Awards®. Nominees represented people with these diseases or individuals at risk of developing the disease with a wide range of backgrounds who conveyed a variety of reasons for getting involved with research. Many study participants had previously cared for family members afflicted with Alzheimer's or Parkinson's. Their personal experiences motivated them to volunteer for a clinical trial, not only for themselves, but to stop Alzheimer's and Parkinson's from impacting future generations. Whatever their reasons, all Citizen Scientists® have the same goal: being part of finding cures for Alzheimer's and Parkinson's.

Meet the 2022 National Citizen Scientist Honorees

Eric Singsaas

Nominated by
EvergreenHealth Research Program
Seattle, Washington

The Cornerstone Award recognizes a clinical trial participant who has personally made extraordinary efforts to support local research and participate in a trial.

Joe Knap

Nominated by
Cleveland Clinic Center for Brain Health
Cleveland, Ohio

The Collaborator Award recognizes a study partner for someone who is enrolled or was enrolled in an Alzheimer's or Parkinson's disease, or dementia, clinical trial.

Bob Deady

Nominated by
University of Kansas Alzheimer's Disease Research Center
Kansas City, Kansas

The Champion Award recognizes a clinical trial participant who fights for a cause and is an advocate for trial participation in the community.

Jenny Knap

Nominated by
Clinic Center for Brain Health
Cleveland, Ohio

The Catalyst Award recognizes a clinical trial participant who acts as a stimulus in bringing about or hastening a result through creative, new, and novel approaches to encourage clinical trial participation.

Eric Singsaas
"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."

Eric Singsaas

Seattle, Washington
EvergreenHealth Research Program

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.

He 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.

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.

Joe Knap
"You didn't choose Alzheimer's but how you respond to it is your choice"

Joe Knap

Cleveland, Ohio
Cleveland Clinic Center for Brain Health

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.

Bob Deady
"The shortage of volunteers is a real hinderance. Scientists cannot make progress without help. We need more volunteers."

Bob Deady

Kansas City, Kansas
University of Kansas Alzheimer's Disease Research Center

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.

Jenny Knap
"I can spur people on to know it's not the end of your life, you have a lot more to live."

Jenny Knap

Cleveland, Ohio
Cleveland Clinic Center for Brain Health

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.

Sponsors

The Citizen Scientist Awards® are made possible by the generosity of our sponsors:

The Dolby Family

GAP always welcomes sponsors committed to supporting the Citizen Scientist Award program.

To find out more, please contact the CSA Program at CSA@globalalzplatform.org.