Advocates relive the past, look to the future

April 22, 2013

For 25 years, Alzheimer's advocates have lifted their voices for millions of Americans in Washington, D.C., at the Alzheimer's Association Advocacy Forum and helped achieve real policy change. The 2013 Forum's opening session, Winning the Fight: Celebrating 25 Years of Alzheimer's Advocacy, paid tribute to the past while rallying attendees to continue the momentum.

Actor, Alzheimer's Champion and longtime advocate David Hyde Pierce, honorary chair of the 2013 Forum, welcomed attendees, receiving a standing ovation when introduced. He set a memorably appetizing tone.

"I love the word 'advocate' because the Spanish word for 'advocate' is 'abogado,' and 'abogado' sounds like 'avocado,'" Pierce said. "Avocados are like Alzheimer's advocates — because they are irresistible and they have big nuts."

Once the laughter and applause died down, he added, "If you're going to come to Washington in the middle of sequestration and ask for funding, you better have both."

Pierce gave attendees a brief history of the Association and the creation of the Advocacy Forum and wished Association founder Jerry Stone a happy 100th birthday. "My notes say that Jerry can't be with us today, but that is flatly untrue," he said. "Jerry has been with us every day since the first day, and he will be walking with you every moment that you're here. Frankly, it will take every one of us to fill his giant shoes. He is the Big Avocado."

Pierce introduced Steve McConnell, who opened the Alzheimer's Association Public Policy division in 1989 and is currently director of U.S. programs for Atlantic Philanthropies. McConnell took a walk down memory lane, reminiscing about the first Forum 25 years ago.

"We did it on a shoestring budget," he said. "We had 125 people here and it went on for four days. People were exhausted, but they were energized. We realized that (the Forum) was here to stay."

McConnell noted that at the time, there was no understanding of the national and international implications of Alzheimer's disease. The change in perception about the disease and the increase in research funding over the years, he said, is a direct result of the hard work and dedication Alzheimer's advocates bring to the cause.

"Your presence here is so important to validate the decision makers who can bring about change and to convince them to step up to this issue," McConnell said. "You will be remembered, and you will make a difference. In 25 years, the world will be very different. With your many voices and one message, you will have tamed Alzheimer's disease, and hopefully it will be a thing you can only read about in history books."

The annual Roll Call of the States followed, with representatives from all 50 states and the District of Columbia — ranging from people with Alzheimer's to Association employees to volunteers — delivering accomplishments from the past year with humor, civic pride and a few mentions of local sports teams' achievements. Advocacy successes included, but were not limited to, implementation of state Alzheimer's disease plans, Silver Alert legislation, advocacy recruitment at Walk to End Alzheimer's®, dementia training for law enforcement, town hall meetings and the creation of a law that allows employees to use sick days to care for an individual with Alzheimer's.

As part of the Roll Call, Maryland state senator and Alzheimer's Association National Board member Verna Jones-Rodwell, attending her first Advocacy Forum, spoke poignantly about her experience with the disease. Both of her parents had Alzheimer's; Jones-Rodwell uses them as an inspiration to serve others and is grateful for Alzheimer's advocates.

"The work I do (as a state senator) is not a vocation, it's an avocation. It's who I am," she said. "I thank you for being persistent, for educating us, for going the extra step…if you don't do it, who else is going to do it, right? This is bigger than all of us, but together, it will not conquer any more of us any longer than it has to."

Rob Egge, Alzheimer's Association vice president of public policy, set the stage for what's ahead. Commenting that there's never been a more important year to have a room full of ready advocates, Egge noted the Obama administration has shown its commitment to the cause but that Congress needs to "get in the game."

Quoting the late Margaret Thatcher, who died with dementia, Egge said, "First you win the debate, then you win the vote. We have been working at this debate. Now we're going to win the vote together. I feel extremely optimistic. We've never had a more compelling case."

Alzheimer's Association Ambassador and member of the Association's Early-Stage Advisory Group Myriam Marquez shared her story about being diagnosed in 2009. A public defender at the time, Marquez said she initially felt despair after learning of her illness, but the "warrior" in her took over; now she devotes her life to fighting the disease that has impacted it. With four children and seven grandchildren, she, like all Forum attendees, wants to do everything she can to find a cure.

"You're in this room because you want to create change," she said. "You can make the difference. Your passion, experience and training will help us toward a cure for this disease. Thank you for joining me in the fight."

Pierce concluded the session by urging advocates to tell lawmakers that "we're going to do everything we can" to win that fight. "Now it is time for our representatives to represent," he said. "Avocados, let's roll!"

Karen Henley of Westbury, N.Y., is ready to roll. Her husband was diagnosed with Alzheimer's at the agonizingly early age of 36. He passed away last year at 47, but Henley, who was her husband's in-home caregiver for the duration of his illness, continues to advocate.

"When you're a caregiver, you feel like things are out of your control," said Henley, a five-time Forum attendee. "Coming to the Forum helps me feel empowered. It gives me strength. It makes me feel like I can make a difference. By telling our story and giving a face to the disease, it's not just something these representatives see on paper. It makes it human."

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