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Everyday activist
If, for some, all the world's a stage, then for Debbie Jones of Cedar Rapids, Iowa, all the world's an Alzheimer-awareness rally. A tireless advocate for Alzheimer research, education and support, Debbie jokes that no one-not friends, family, grocery store clerks or cocktail party guests-escapes her appeal to join the fight against Alzheimer's disease.
"I talk to everyone," she said. "This is an epidemic, and if people don't know about it, I want them to know about it. My goal is to spread the word as much as possible."
For this everyday (all-day) activist, spreading the word means educating people on the disease; alerting caregivers to services that can provide some relief and assistance; and urging support of Alzheimer research. Though her commitment and zeal are second to none, she's relatively new to the world of activism. For years, her interaction with Alzheimer's disease was limited to her personal experience. As it is for many, however, that experience changed the course of her life.
In 1988, Debbie's mother was diagnosed with Alzheimer's. Within four years, she was in a vegetative state. Debbie's father cared for her mother throughout those years; but the strain-and shock-of her mother's rapid deterioration took a toll.
"It's a wicked disease, and it's terrible what happens to families," she said.
Rather than shoving those painful memories to the back of her mind, however, Debbie committed herself to reliving them day after day.
"I don't want to forget what it was like living through that," she said. "After my mom died, I said, 'I've got to do this for her. I've got to help those people who are living through this every day.'"
Debbie found her way to the Alzheimer's Association® and quickly became a leader. As president of the board of directors of the East Central Iowa Chapter, Debbie now travels throughout eastern Iowa addressing caregivers, donors, volunteers and just about anyone else who'll listen.
Debbie's message is so powerful and her speaking so persuasive, she was selected to be a speaker at the 2006 Alzheimer's Association Public Policy Forum candlelight vigil. The vigil is a moving event that honors those with Alzheimer's and their caregivers. But it's also a rallying point. Last year, Debbie urged attendees to share their stories with their representatives on Capitol Hill, as well as their friends and neighbors back home.
"We're so close!" she said, of finding a cure. "But without funding, it's like being at a race and you're just about to cross the finish line when someone pulls you back. We need funding to make sure we don't lose any ground, and we need to get as many people involved in this fight as possible."
But even Debbie, with her seemingly indefatigable spirit, can wear down. And that's where the Forum comes in. "It's invigorating," she enthused. "I thought I was pretty into it, then I get there and think, 'Wow. I've got a lot to do!'"
Debbie will be at the 2007 Forum, where she will once again draw ideas and energy from the other activists, and renewed determination from the scientists and researchers who share the latest clinical news and advances with attendees.
"I always say, some day, I hope I see my mom in heaven, and I can tell her with excitement about how far we've come and the strides we've made in this disease."
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