Celebrating our 2020 Honorees

Citizen Scientists® Are the Missing Piece of the Alzheimer’s Puzzle

The concept behind the Citizen Scientist Awards is simple – we can’t find an Alzheimer’s cure without clinical trial participants. Ninety percent of Alzheimer’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 center to ask about research opportunities.

Many Stories, One Common Purpose

In 2020, GAP-Net sites across North America nominated Alzheimer’s study participants for the Citizen Scientist Awards. Nominees represented people with the disease 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. Their personal experiences motivated them to volunteer for a clinical trial, not only for themselves, but to stop Alzheimer’s from impacting future generations. Whatever their reasons, all Citizen Scientists have the same goal: Being part of finding a cure for Alzheimer’s.

Meet the 2020 National Citizen Scientist Honorees

Cornerstone Award

2020 Honoree

Collins Lewis

Collins Lewis

Nominated by
Washington University in St. Louis: Knight Alzheimer Disease Research Center (ADRC)
St. Louis, MO

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

Collaborator Award

2020 Honoree

Matt Willhite

Rep. Matt Willhite

Nominated by
JEM Research Institute
Lake Worth, FL

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

Champion Award

2020 Honoree

Deborah Whelan

Deborah Whelan

Nominated by
Roper St. Francis Research and Innovation Center
Charleston, SC

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

Catalyst Award

2020 Honoree

Dennis Chan

Dennis Chan

Nominated by
Center for Alzheimer Research and Treatment at Brigham and Women’s Hospital
Boston, MA

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.

Collins Lewis
“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.”

Collins Lewis

St. Louis, MO
Washington University in St. Louis: Knight Alzheimer’s Disease Research Center (ADRC)

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.

Matt Willhite
“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.”

Representative Matt Willhite

Lake Worth, FL
JEM Research Institute

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.

Deborah Whelan
“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.”

Deborah Whelan

Charleston, SC
Roper St. Francis Research and Innovation Center

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.

Dennis Chan
“When I first started looking into clinical trials, one of my children challenged me to do something instead of just raising money.”

Dennis Chan

Boston, MA
Center for Alzheimer’s Research and Treatment at Brigham and Women’s Hospital

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.

Sponsors

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

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.