Advocates with Alzheimer's gather to learn, connect and share

April 22, 2013

As the Alzheimer's Association's 25th annual Advocacy Forum kicked off on Monday, April 22, advocates living with Alzheimer's and other dementias attended an educational session and networking event. Hosted by the Alzheimer's Association National Early-Stage Advisory Group, this gathering provided an opportunity for those with the disease and their care partners to share their stories and prepare for Wednesday's visits to Capitol Hill.

Dean Hartley, director of science initiatives, Alzheimer's Association, gave the assembled guests an overview of the latest Alzheimer's research and the need to speak with elected officials about increased funding.

Hartley first spoke about the drug pipeline and the barriers that stand in the way of achieving treatments and a cure, citing the necessity of enhanced communication between the pharmaceutical industry and academia, an issue that the biannual Alzheimer's Association Research Roundtable, a consortium of scientists from the pharmaceutical, biotechnology, diagnostics, imaging and cognitive testing industries, is attempting to address.

Hartley emphasized the importance of clinical trials in drug development, even if the trial doesn't succeed.

"A lot of clinical trials fail," he said, "but that doesn't mean they are always a failure. There is information there that we need."

He cited recent trials of solanezumab, a drug manufactured by Eli Lilly and Company that concluded Phase 3 testing in the fall of 2012. Although two individual trials of the antibody failed, pooled data from the studies revealed a 34 percent reduction in cognitive decline among people with mild Alzheimer's.These promising results will drive continued testing of the drug.

Hartley also encouraged advocates to spread the word about the need for additional volunteers for clinical trials, directing interested individuals to Alzheimer's Association TrialMatch®, a matching service that offers information to the public and health care professionals.

"We need more than 50,000 volunteers for dementia-related clinical trials," Hartley said. "TrialMatch acts as a concierge, guiding you through the enrollment process."

Following Hartley's remarks, former Congressman Dennis Moore, an Alzheimer's advocate living with the disease, addressed the crowd, speaking about the importance of political action.

"It's an honor to be among so many advocates living with the disease and their care partners," Moore said. "Your voice is a powerful tool, and I applaud you for your commitment."

Alzheimer's Association Ambassador and Early-Stage Advisory Group Member Gordon Broom left the session inspired. He encouraged others affected by the disease to add their voices to the fight.

"For there ever to be a cure, we need research, which costs money," he said. "And we need others to step up to the plate and lobby Congress."

Last year was Broom's first time at the Forum, and his experience inspired him to take the next step by joining the Ambassador program. This program is an opportunity for advocates to work with Association staff to develop a relationship with their local elected officials.

Broom calls on others facing Alzheimer's to become an Alzheimer's advocate.

"Being an advocate makes you more engaged with others suffering from the disease," he said. "It's motivating to work together for enhanced care and additional research."

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Alzheimer's Association Advocacy Forum 2014

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