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"Citizen Scientists" Honored for Contributions to Alzheimer's Research

Lt. Governor Dan McKee Praises Nominees from Rhode Island Hospital for Receiving Global Alzheimer's Platform Foundation Awards

PROVIDENCE, RI Lt. Governor Dan McKee, Chair of the State's Long-Term Care Coordinating Council and Alzheimer's Executive Board, today honored six participants in Alzheimer's research studies at Rhode Island Hospital for their contributions to finding treatments for the disease. He was joined by Dr. Brian R. Ott, Director of the Alzheimer's Disease and Memory Disorders Center at Lifespan Rhode Island Hospital, and John Dwyer, Jr., President of the Global Alzheimer's Platform (GAP) Foundation, the organization that sponsors the National Citizen Scientist Awards. This is the kickoff event of the first National Citizen Scientist Week.

"Today we honor those who volunteer for Alzheimer's clinical studies, and the family, friends, caregivers, and healthcare providers who support them," said Lieutenant Governor McKee. "Though we all have a role to play in ending Alzheimer's, none is more important than that played by our Citizen Scientists."

The six nominees from Rhode Island Hospital for National Citizen Scientist Awards are:

Deborah O'Brien (Hopkinton, RI) Deborah cared for both of her parents when they had dementia, and now travels 137 miles roundtrip every month to participate in a clinical trial. "My family went through so much pain because of Alzheimer's. I don't ever want another family to go through that," she says.

Barbara Silva (South Kingstown, RI) A fourth-degree blackbelt, Barbara has brought her combative spirit to the fight against Alzheimer's. "Get involved in research now! The longer you wait, the more you lose," she says to those on the fence about joining a clinical trial.

Nancy Curran (Newport, RI) Nancy, who worked with Alzheimer's patients when she was an occupational therapist, says, "I have hope and I want people to know there is hope. It's nothing to be ashamed of. It's something I'm going to fight because that's who I am."

Michael Russo (Scituate, RI) Michael's father lost his battle with Alzheimer's 12 years ago, prompting Mike to look for opportunities to join an Alzheimer's study. "As soon as I met Dr. Ott and his team, I told them I would do anything they asked of me. Alzheimer's research is too important to hold back," he says.

David Gallogly (South Kingstown, RI) David's daughter Katie accompanies him to appointments. "Everyone has been so friendly. It's nice," she says. "It's like we have our little dates, and it's sweet."

Pamela Moorby (Warwick, RI) Pamela has volunteered for seven studies since being diagnosed with Alzheimer's. "I tell my story to make people less scared of research," she says.

"Alzheimer's research, and society in general, need more people like the individuals and couples we are celebrating today," said GAP Foundation President John Dwyer. "Their contributions are remarkable and each has noble reasons for volunteering for a study. If you're concerned about your memory, or you have a diagnosis, or you're over age fifty, healthy and you care about finding a cure, you can join these citizen scientists in the urgent fight against Alzheimer's by contacting a research center near you."

Research participants may learn about their personal health condition or have access to experimental treatments while they are part of the team that is seeking a cure. Even so, nine out of ten Alzheimer's disease trials experience delays because of recruitment difficulties. The Global Alzheimer's Platform Foundation works with more than 70 leading research centers, including Rhode Island Hospital, to speed and improve clinical trials.

"Our main limitation to achieving disease-modifying treatments now is not a lack of promising therapies for Alzheimer's disease," said Dr. Ott. "It's a lack of sufficient volunteers necessary to move clinical trials to completion as quickly as possible."

Alzheimer's currently affects 23,000 Rhode Island seniors, with that number projected to rise to 27,000 by 2025 if no effective treatments are found.

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CONTACT Andrea Palagi Lt. Governor's Office Andrea.Palagi@ltgov.ri.gov (401) 222-2371

Christina Spaight O'Reilly Rhode Island Hospital christina.oreilly@lifespan.org 401-444-6421

Nat Wood Global Alzheimer's Platform Foundation nat@globalalzplatform.org 410-507-7898

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