Advocates connect with elected officials, ask them to take action

April 25, 2012

After two days of inspiration and education, the 2012 Alzheimer's Association Advocacy Forum culminated with state delegations going to Capitol Hill in large numbers for meetings with lawmakers. Armed with passion and information, advocates let legislators know in no uncertain terms that the time is now to address the escalating Alzheimer's crisis.

Montana representatives Suzanne Belser, executive director of the Alzheimer's Association Montana Chapter, and Joanie Tooley, an Alzheimer's Association Ambassador, attended a joint breakfast for constituents of Democratic Sens. Max Baucus and Jon Tester. "We want to make the connection again here in Washington," Belser said. "We've visited them at home in our district, and we're reinforcing that. We'll see them again when we go back."

"Alzheimer's disease can't wait," said Tooley, who lost her mother to Alzheimer's and saw her father, her mother's caregiver, pass away first. Tooley's father-in-law also has the disease. "I really want to do something so that other families don't have to go through this."

Tooley added that her first Forum has been an amazing experience overall. "I've been blown away by it," she said. "I think it's been extremely impressive — the caliber of the people who've been training us newbies and the deep sentiment from all of the volunteers who are trying to make a difference."

Alzheimer's Association President and CEO Harry Johns and Mary Richards, executive director of the Alzheimer's Impact Movement (AIM), met with aides to Sen. Thad Cochran (R-Miss.), the highest-ranking Republican on the Senate Appropriations Committee. Among other issues, Johns and Richards talked about the importance of a strong National Alzheimer's Plan and discussed the need for greater government commitment and resources to solve the public health crisis of Alzheimer's. They left behind a package of Mississippi-specific Alzheimer's facts and figures relevant to Sen. Cochran's constituents.

"We had a positive and engaged meeting with Sen. Cochran's staff, who are very knowledgeable," he said. "We look forward to what is a growing relationship with them as a result of this and future meetings."

Former Rep. Dennis Moore (D-Kan.) and his wife, Stephene — popular, visible figures throughout the Forum — made a visit to the office of Sen. Pat Roberts (R-Kan.). A strong supporter of the Alzheimer's cause, Sen. Roberts told his audience — which included Rob Egge, Alzheimer's Association vice president of public policy, and Doug Stark, Alzheimer's Association Ambassador and board chair of the Association's Central and Western Kansas Office — stories of old friends who developed the disease.

As it turns out, that now includes Moore, his past colleague, who announced his diagnosis in February, shortly after leaving Congress. "We've known each other for a long, long time," said Moore. "We both enjoy an unusual sense of humor. We've always got that in common."

Moore found the role reversal interesting. As a member of Congress, he was always on the receiving end of requests from people in his district; now, as an advocate, he was making the ask.

"I appreciate very much the kind attention we got here," he said. "Most of the people up here understand how the system works. They know it's important to learn as much as they can about issues and then do the right thing when it comes up to vote. Alzheimer's has to be a priority for our country."

Stark lost two grandparents to Alzheimer's disease, and both his mother and mother-in-law now have severe dementia. Due to the disease striking his family, Stark started Comfort Care Homes, a Wichita, Kan., company that provides 24/7 residential care for people with Alzheimer's.

Simply put, Stark took to Capitol Hill because Alzheimer's is personal.

"The cause is so important to me," he said. "When I sit there with the husbands or wives who have to place their loved ones with me and they're crying because of their 50 years of marriage and they promised ‘Till death do us part ... Alzheimer's is just a horrible disease."

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