In Our Own Voice: Individuals with Alzheimer's Speak Out

The day before their trek to Capitol Hill, advocates at the Public Policy Forum sat riveted while listening to those directly affected by their efforts--those with Alzheimer's disease.

Dave Harris, Woody Hoffman and Jenny Knauss, all diagnosed with early-onset Alzheimer's, took the stage the morning of March 22 to tell their stories of how they reacted to their diagnosis, how they became involved in advocacy and what policy initiatives are most important to them.

"I'm very single-minded about advocacy," said Woody Hoffman of San Francisco. "We need to encourage legislators to put money aside to find a cure--and, quite frankly, soon, so I can take advantage of it when it's found."

Woody was diagnosed with Alzheimer's disease in May 2002, less than four months after marrying his wife, Cathy. Shortly after the diagnosis, Woody began speaking publicly on behalf of individuals with Alzheimer's, while Cathy has advocated for early-onset support groups.

For Chicagoan Jenny Knauss, becoming an Alzheimer advocate was a natural fit. Jenny has been an advocate all her life, and before retiring at the end of 2002, she spent 20 years as executive director of the Illinois Caucus on Adolescent Health. For Jenny, Alzheimer outreach and education are imperative.

"There is oodles to do," she said. "Everyone in our country needs a doctor who understands the disease and a support group to belong to. There are still areas and ethnicities where Alzheimer's is a foreign language. We must change that. And we need much more research money."

Increasing federal Alzheimer research funding is at the top of Boise, Idaho, advocate Dave Harris' priority list, with caregiver support coming in a close second.

"We need to be better prepared to support the people that love us," Dave said as he looked at Nancy, his wife of 44 years. Although he initially struggled with his diagnosis, Dave's outlook is brighter than ever.

"The last two years have been the happiest of my life," he said. "There isn't a day that I wake up without joy. We need to show there is a lot more life after the Alzheimer diagnosis."

You can learn more about the Advocacy efforts of the Alzheimer's Association Greater Illinois Chapter by visiting our website at www.alzheimers-illinois.org/advocacy.

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