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Friday, October 30, 2020 - Roper St. Francis Research and Innovation Center volunteer honored with National Citizen Scientist Champion Award

Deborah Whelan

The Global Alzheimer’s Platform Foundation (GAP) has recognized Deborah Whelan, a retiree living with Alzheimer’s disease, with the National Citizen Scientist Champion Award.

The Roper St. Francis Research and Innovation Center, where Whelan has volunteered in four Alzheimer’s clinical trials, nominated her for the award to recognize her years of passionate advocacy at the state and federal level to support Alzheimer’s research. Whelan was selected from dozens of nominees from GAP research centers nationwide.

“Deborah’s tireless efforts over the last five years to share her story with her community and with her representatives is absolutely inspirational, and incredibly important for the search for a cure,” said GAP President John Dwyer. “Hearing directly from people living with Alzheimer’s disease is extremely impactful for lawmakers.”

The National Citizen Scientist Champion Award honors a clinical trial volunteer who fights for a cause and is an advocate for trial participation in the community.

Whelan was diagnosed with early-onset Alzheimer’s five years ago at age 64, shortly after her father died of the disease. She immediately joined a clinical trial, and since then, she has joined the next available study whenever she completes the last one. Today, she has participated in four studies, travels 150 miles every month for appointments, and has spoken about her experience at multiple Roper St. Francis Research and Innovation Center outreach events.

“There are not currently any treatments for me, but I want to help my daughters and my grandson and other people,” Whelan said. “I want to make as many people as possible aware that there is something you can do to help eradicate this disease.”

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.

“Deborah is the definition of a champion of research,” said Dr. Jacobo Mintzer, the director of Roper St. Francis Research and Innovation Center. “Her willingness to share her personal story and to give her time generously to clinical trials, to interviews, and to events has helped hundreds and even thousands more people become aware of the importance of Alzheimer’s research.”

Alzheimer’s is a growing public health threat, with more than 95,000 people over 65 in South Carolina living with the disease. Along with COVID-19, it is the only top ten cause of death in the United States with no treatments and no cure. But despite the importance of Alzheimer’s research, 90% of Alzheimer’s clinical trials are delayed by slow recruitment, and 99% of potential volunteers are never referred to or never consider joining Alzheimer’s clinical trials.

To accelerate the delivery of innovative Alzheimer’s therapies, GAP works with Roper St. Francis Research and Innovation Center and more than 80 other research centers across North America to improve recruitment efforts and the operation of clinical trials. The National Citizen Scientist Awards are supported by the Vradenburg Foundation. To learn more, visit globalalzplatform.org/awards.

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