CNN’s Crowley shares personal story of her mother’s Alzheimer’s

Faces of Alzheimer's emerge on Capitol Hill

April 9, 2014

On April 9, spring arrived in Washington, D.C., bringing more than blooming cherry blossoms and blue skies to Capitol Hill — nearly 900 Alzheimer's advocates met with lawmakers to encourage their support of legislation and funding critical to the fight against Alzheimer's disease.

Hill Day, as it is known to advocates, is the culmination of the Alzheimer's Association Advocacy Forum, an event that brings passionate individuals to the nation's capital to learn about Alzheimer's issues, share their personal challenges with the disease and request legislative support from senators and representatives.

Mackenzie Kelley, 27, and Drew Levin, 30, from Minneapolis came to the Hill to share their stories with Sen. Al Franken (D-Minn.) and other members of Congress. Kelley and Levin are responsible for the creation of the Young Champions group at the Alzheimer's Association Minnesota-North Dakota Chapter, a diverse group of emerging leaders engaged in defeating Alzheimer's. In just three years, the group has grown from 10 to over 100 members.

Their visit was part of Franken's Wednesday morning breakfast, where he hosts all Minnesotans visiting Washington and treats them to Mahnomin porridge made from wild rice harvested from the White Earth Indian Reservation in the northwestern portion of the state.

Waiting for the meeting to begin, first-time attendee Levin, whose uncle is living with Alzheimer's, said the past few days at the Forum had prepared him for the conversation.

"The Forum was just as advertised — a crash course in what we're doing to fight Alzheimer's and the state of the disease. I feel knowledgeable and able to speak about the issues here and when I go back to Minnesota."

Franken greeted a crowd of about 60 individuals, more than 30 of which were from the Association's delegation. He recognized the group dressed in purple sashes as Alzheimer's advocates and spoke to the importance of increasing research funding.

"We need to do a lot more research on Alzheimer's at the NIH," said Franken, who lost his mother to the disease. "In addition to the human cost, this disease is a huge economic impairment. It costs a tremendous amount. Finding a cure for Alzheimer's is the kind of research we need to do."

Advocates spoke with Elizabeth Winkler, a Franken staffer, and shared materials highlighting Alzheimer's as the most expensive disease in America. In addition, they asked for the support of an additional $200 million for Alzheimer's research at the National Institutes of Health (NIH) as part of a commitment to a strong National Alzheimer's Plan. One of the plan's major objectives is to find methods of treatment and prevention for Alzheimer's by 2025.

Winkler assured advocates that Franken, a co-sponsor of the Health Outcomes, Planning, and Education (HOPE) for Alzheimer's Act, and a member of the Congressional Taskforce on Alzheimer's Disease, is a champion for the cause.

"He is passionate about this issue," Winkler said. "He is tirelessly seeking funding for the NIH."

Kelley, who lost her mother to the disease a year and a half ago, said meeting with elected officials face-to-face is critical to moving the cause forward.

"We need to continuously share our stories, and our representatives and senators need to hear them, because we need more spokespeople in Congress," she said. "And that's what these meetings are about. It's not about memorizing facts all the time. Our stories will make them act."

Franken posed for photos and thanked advocates for their visit, acknowledging the power of the group's trek to the Hill.

"You are an army of purple, and people are taking notice," he said.

A delegation of advocates from the Alzheimer's Association Midlands Chapter was able to secure a meeting with Sen. Deb Fischer (R-Neb.).

Chris Nielson, an advocate from Omaha, Neb., was attending his first Forum to speak up for further research and support for those facing the disease. Three generations of his family, including his great-great-grandfather, great-grandma and two great-aunts, had Alzheimer's. Recently, his mother moved in with his grandfather, who is living with dementia.

"My mom is his caregiver, and she also works full time," he said. "She doesn't have any time to just take care of herself."

Nielson told the senator about the overwhelming costs of Alzheimer's: Nearly one in five Medicare dollars is spent on a person with the disease. He also highlighted the success of research funding in combating other conditions, like cancer, HIV and cardiovascular diseases, and asked that Fischer support a similar investment in Alzheimer's research.

"Costs are expected to skyrocket," Nielsen said. "This is an investment that will save money and lives in the long term."

Fisher shared that her sister-in-law, 65, developed younger-onset Alzheimer's disease and is currently living in a nursing home. She showed the delegation paintings in her office that her sister-in-law had created.

"You don't have to convince me," said Fischer. "This is an evil, sad disease."

Nichelle Horton-Brown, M.D., also from Omaha, shared her experience with the disease both personally and professionally. As a grand-daughter, she helped her entire family care for her grandma, who died of Alzheimer's three years ago. As a physician, she treats many geriatric patients struggling with the disease.

Horton-Brown also shared her perspective on the disease as a woman.

"Recent statistics show that a woman in her 60s is twice as likely to develop Alzheimer's in her lifetime as she is to develop breast cancer," she said. "As a physician and a woman, that is just astounding to me!"

Horton-Brown asked for the senator to co-sponsor the Alzheimer's Accountability Act, which would require the NIH to submit an annual Alzheimer's research budget proposal directly to Congress and the president, allowing scientists to speak directly to Congress about the resources needed to implement the National Alzheimer's Plan.

Fisher agreed to review the bill and encouraged the advocates to arrange a follow-up meeting to discuss it with her further when she is in Nebraska.

"I appreciate you folks coming to Washington," she said. "I hope to see you again in the district."

 
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Alzheimer's Association Advocacy Forum 2015

www.alz.org/forum

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