Celebrating Clinical Trial Participants: Citizen Scientists^®

The Global Alzheimer’s Platform Foundation (GAP) created a first-of-its-kind award to celebrate Alzheimer’s disease clinical trial participants. The only way to find treatments and cures for Alzheimer’s is through clinical trials and these volunteers make that research possible.

The Need for More Clinical Trial Participants is Significant

Alzheimer’s trials over the next few years are estimated to need more than 25,000 participants. According to a 2016 Harris Poll undertaken by GAP, 60% of Americans are willing or would consider participation in Alzheimer’s disease clinical trials, but far fewer than 10% do so. There is a systemic need to educate Americans about the availability of clinical trials and to encourage participation.

GAP Citizen Scientist Awards^® Overview

GAP established GAP-Net, a growing network of more than 70 leading private and academic clinical trial sites. All GAP-Net sites can nominate up to three Citizen Scientists® in each of three award categories for a total of up to 9 nominees per GAP-Net site. Each site will celebrate these nominees at local site and regional events. A final awardee will be selected in each award category.

Each nominated individual will be presented with a certificate for being named a Citizen Scientist Award^® Nominee. Three selected honorees will be recognized at the annual National Alzheimer’s Summit in Washington D.C., held in the fall of each year.

A clinical trial participant who has personally made extraordinary efforts to support local research and participate in a trial.

A clinical trial participant who fights for a cause and is an advocate for trial participation in the community.

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.

Clinical Trial Participant Spotlight

Clinical trial participants are on the front line in the fight against Alzheimer’s disease. These heroes are making a difference both being part of research and encouraging more people to volunteer for clinical trials.

“This study is like a lottery ticket, you never know if this might be the winner.”

Barb Silva

Rhode Island Hospital, Providence, RI

Barbara (Barb) is the 2019 Citizen Scientist Catalyst Award
honoree. She received an Alzheimer’s diagnosis several years ago
at Rhode Island Hospital (RIH) even though her primary care
physician had told her she had nothing to worry about. Her
connection with RIH continues today as a clinical trial participant in
one of their studies. Barb has been involved in fitness classes for
decades, so it was a natural fit for her and a friend to co-create a
memory fitness class program. Her business partner, Elaine
Sewatsky, is also her research study partner. Of Barb’s decision to
seek a second opinion at Rhode Island Hospital, she says, “I’m glad I
begged for help after my first physician told me not to worry. Every
second you lose matters.” Barb resides in Wakefield, RI.

“Alzheimer’s can isolate you, which is why getting out and sharing your experience is so important. You have to do something to help somebody else.”

Rochelle Long

University Hospitals, Beachwood, OH

Rochelle is the 2019 Citizen Scientist Cornerstone Award honoree. Her
involvement with Alzheimer’s clinical trials at the University Hospitals
Brain Health and Memory Center in Beachwood, OH spans 18 years
and counting. She has been a participant or research study partner in
seven trials and is a member of the University Hospitals Minority
Outreach Board, encouraging African Americans and Latinos—who are
disproportionately affected by Alzheimer’s but underrepresented in
research—to get involved. “Drugs that work for white men may not
work as well for black women,” Long says. “More of us in the African-
American community need to be involved in research to determine
the reasons for that.” Rochelle resides in Shaker Heights, OH.

“If you participate in a successful Alzheimer’s trial, you are likely to get the drug sooner, even if you are on placebo during the study. It would be very positive to postpone or avoid what I went through with my family.”

Richard Apple

Chicago, IL

Great Lakes Clinical Trials

Richard is the 2019 Citizen Scientist Champion Award honoree. His
passion for Alzheimer’s disease research advocacy stems from having
lost two of his grandparents to Alzheimer’s and having been the
primary caregiver to his uncle and his mother, both of whom died
from the disease. “Caring for my family members taught me how little
the health system knows about caring for individuals with dementia,”
Apple says. “If I happen to be in a study that’s successful, I’ll be in on
the ground floor of the treatment. It would be very positive to
postpone or avoid what I went through with my family.” He enrolled
in his first trial at Great Lakes Clinical Trials in Chicago, IL immediately
after he retired and has participated in four studies overall. Richard
resides in Rockford, IL.

Thanks to the support of Bob, her husband and study partner, as well as friends and family, Kaye has faced her diagnosis with alacrity and a determination to help others. "I’m comforted by knowing that I’m not the only one going through this, and I even convinced a member of my extended family to get screened for a study," she said, "It’s satisfying to help find a cure in any way I can."

Kaye Combs

Sarasota, FL

Intercoastal Medical Group

After watching her Aunt Mary suffer from Alzheimer’s disease, and being diagnosed with the disease herself, Kaye began to seek opportunities to learn more about dementia through support groups and educational meetings within her community. At one of the local seminars she attended, the Intercoastal Medical Group Research Manager, Jeannette Wilson, made a presentation about Alzheimer’s clinical studies; less than a year later Kaye was enrolled in the DAYBREAK study. Kaye had been making monthly visits to Intercoastal for one and a half years when that study ended. She immediately decided to be screened to participate in TRAILBLAZER.

"I am committed to doing everything I can to help find a cure or stop the progression and ultimately eradicate the illness so that no family faces hardships and devastation this illness can cause. I know that as I age, my chances of getting the disease increase and I’m concerned for my children and future heirs. I encourage people to consider volunteering for a clinical research program. My dream is that they will eradicate the disease completely."

Barbara Walker

Lee’s Summit, MO

University of Kansas Alzheimer’s Disease Center

Barbara was a caregiver for her husband, Harvey, who was diagnosed with Alzheimer’s at the age of 56. She was his caregiver for 6½ years before he passed away due to complications of Alzheimer’s. They were married for 38 years and have 3 daughters and 7 grandchildren.

"It's so important for Latinos and other minorities to engage in clinical trial research. We need to make sure that our communities have a voice in the research process and we have to take responsibility for our families and for ourselves."

Daisy Duarte

Springfield, MO

The Washington University School of Medicine in St. Louis

Daisy is a caregiver, clinical trial participant and advocate for the LatinosAgainstAlzheimer’s Network. She has been a caregiver for her mother, Sonia, who was diagnosed with early onset Alzheimer’s in 2013 at age 55. In 2014, Daisy tested positive for the gene linked to early onset Alzheimer’s disease. As one of the few Latinas enrolled in an Alzheimer’s clinical trial, Daisy is committed to raising awareness of the importance of Alzheimer’s research and funding.

"I carry the Alzheimer’s marker gene APOE-4. I know the frontline well: Alzheimer’s stole my maternal grandfather, my mother, my paternal uncle, and before my father’s death, he also was diagnosed with dementia. After a visit to my pity party, I got off the mat to dance with Alzheimer’s, strategies for living with the disease in faith, hope, and humor."

Greg O’Brien

Cape Cod, MA

An award-winning investigative reporter and author, Greg was diagnosed with early onset Alzheimer’s in 2009. He has been writing, chronicling, and talking about the process ever since. Greg’s book, On Pluto: Inside the Mind of Alzheimer’s , has been described as “heartbreaking, defiant, profound” and a new edition was just released this summer. Greg has served on the national Alzheimer’s Association Early Onset Advisory Group, is a patient advocate for the Cure Alzheimer’s Fund of Boston, and is a board member of the distinguished UsAgainstAlzheimers in Washington, D.C.

"As there is no treatment or cure for Alzheimer’s disease at this time, we need to focus on studying family members of patients and tracking the changes at the earliest stages. We need to push for greater urgency to defeat this devastating disease."

Karen Segal

Chicago, IL

Weill Cornell Medicine’s Alzheimer’s Prevention Clinic

In 2002, after her mother was diagnosed with Early Onset Alzheimer’s Disease, Karen shifted her focus to raising awareness and fundraising for the Alzheimer’s Association. She has been an active board member of the Chicago Rita Hayworth Gala Committee and co-chaired the 2014 Chicago Gala. In 2015, Karen joined the UsAgainstAlzheimer’s board and is focusing her efforts on advocating for increased focus on Alzheimer’s prevention efforts.

"To anyone on the fence about joining an Alzheimer’s trial, I would say look at the bigger picture. The benefits of participating go far beyond any medication you receive. We’re doing this for future generations. Besides, if you can do something to stop your own memory loss, why wouldn’t you do it?"

Karen Watson

Daytona Beach, FL

Progressive Medical Research

Karen began to question her own chances of developing Alzheimer’s while caring for her mother who was living with the disease. Knowing that she was searching for answers, a friend told Karen about Alzheimer’s clinical research that she was participating in at Progressive Medical Research in Port Orange, FL. Karen immediately reached out to the site and began the screening process to become a volunteer trial participant. She recently organized opportunities for groups of her friends to ask questions of Progressive’s own Dr. Marshall concerning Alzheimer’s disease, dementia, and clinical trial participation. She even convinced twelve of her friends to get the cheek swab test at that event. With the bigger picture in mind, Karen is committed to continuing to push for an Alzheimer’s cure.

Celebrating Clinical Trial Participants: Citizen Scientists®