After a painful experience with her parents’ Alzheimer’s, Connie Lesko found herself feeling heartbroken for the Alzheimer’s patients who don’t have close family to advocate for them. She shifted her marketing career to focus on the senior living industry, where she has worked for the past fifteen years – including multiple stints at facilities that focus on Alzheimer’s patients. Connie is involved with the Byrd Alzheimer’s Research Center and Institute and chaired a major fundraising event. She is passionate about prevention, finding a cure, and a medication that can effectively treat Alzheimer’s symptoms, and knows that clinical trials are the key to finding answers. 

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.

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.

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.

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.

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.

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.

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.

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.

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.