Roll call illuminates local advocacy success stories

April 24, 2012

Tuesday's Advocacy Forum general session began with the annual Roll Call of the States, where advocates from every state and the District of Columbia celebrated the myriad local policy advocacy successes they've achieved since the last Forum.

Forum co-chair Kimberly Reed welcomed attendees by telling the story of her grandmother, who is 90 years old and has Lewy body dementia, and her 94-year-old grandfather, who helps care for her. "He goes into her bedroom every morning and sings to her," Reed said. "She gets the biggest smile on her face." The song her grandfather sings is "You Are My Sunshine"; Reed asked the crowd to join in on a verse to serve as motivation for the days ahead: "May we always have sunshine today and beyond."

Fellow co-chair Jackie Kouri commented on one aspect of the Forum she believes has changed over the last few years. "When we first started coming (to the Forum), we were coming to be educated, to learn, to be trained," she said. "While this is still a wonderful educational tool for all of us, I see more people coming who are already knowledgeable, already educated, and now we're coming to take action."

Kouri also noted that there were more than 130 Forum attendees under age 35, a number she called "enormous."

"You are so action oriented. I love that about you, and I hope it rubs off on all of us," she said. "Your voices are so fresh and compelling and vital to this Alzheimer's movement. We're inspired by you."

In alphabetical order by state, enthusiastic representatives then shared their achievements, with many prefacing their remarks with jokes or references to the success of their pro or college sports teams. With each speaker, it became clear just how much advocates have achieved on a local level.

At least 19 states reported implementation of, or progress toward, Alzheimer's Disease State Plans, and at least 12 states mentioned progress on adding cognitive impairment modules to the Behavioral Risk Factor Surveillance System (BRFSS). Legislative victories included protecting people with dementia from physical and financial abuse; mandating training for people providing dementia care; and featuring Alzheimer's Association information in medical school curriculum. More than a few states also proudly trumpeted impressive increases in advocates recruited and successful Hill days at their state legislatures.

"There is no denying the challenges we have ahead of us, but there's a spirit in this room that's undeniable," Kouri concluded. "I have no doubt you'll take that spirit to the Hill tomorrow and back home to your communities. We all will be part of leading this world to that goal of a world without Alzheimer's."

Bill Thies, Alzheimer's Association chief medical and scientific officer, closed the session by providing an update of promising areas of Alzheimer's research. Thies said that in the next eight months, drug studies will show whether removing amyloid from the brains of people with Alzheimer's will have any effect on the progression of the disease.

"At this point, we don't know if (the information) will be positive or negative, but either way this is going to be a major advance for the field," he said. "As we're looking for progress, we're all frustrated by the fact that it doesn't come fast enough. But this new information could bring us new therapies or could provide a jump-off to additional therapies that could happen more rapidly."

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