Sunday, April 13, 2014

Voices for Alzheimer’s—Nine Hundred Purple Sashes

I just returned from my fourteenth annual journey to Washington, D.C., for the Alzheimer’s Advocacy Forum. My sister, Roberta, made the trip with me this year—for her third trip to our nation’s capitol to be a voice for Alzheimer’s.

We went to D.C. early in order to take a look around. As I browse the photos I snapped along the way, images emerge showcasing a city of stunning architecture, monuments, cherry blossoms, reflecting pools, fountains, gnarled trees, gawking tourists, honking taxis, a Sponge Bob Mailbox, a street musician playing a soulful saxophone…

My camera captured images of the past and future statues in front of the National Archives, and I read the words beneath: “Study the Past,” and “What Is Past Is Prologue.” As I pondered those two statements, I had turned and snapped a photo of the building across the street. Then, in the corner of the frame, I saw him. He was sleeping on a park bench, covered with a tattered green plastic tarp. This thin shelter was expected to ward off the chill of the night.

As we walked past him, we could hear his snores and see the blanket rise and fall. He was one of the unsheltered homeless. Out of D.C.’s 6800 homeless, more than 500 are unsheltered. They sleep in parks, in doorways, cubbyholes throughout the city. We saw a homeless man in Subway counting coins to buy a breakfast sandwich. Others beg for coins, or wander the streets pushing a cart overflowing with their treasures, hollow-eyed and defeated. I couldn’t help but wonder how many were confused and suffering from dementia.

It bothered me to know that statistically the odds were high that at least some of the homeless must have Alzheimer’s. After all, the focus of this journey  was  Alzheimer’s and a strategy to keep Alzheimer’s research funding in the budget.

Alzheimer’s is the most expensive disease in America and drains Medicare and Medicaid of $150 billion annually. Yet to fight this monster disease that gulps our economy, we wield a plastic sword.

Testifying on Alzheimer’s research before the U.S. Senate Appropriations Subcommittee, Francis Collins, Director of the National Institutes of Health, said, “We are not, at the moment, limited by ideas. We are not limited by scientific opportunities. We are not limited by talent. We are, unfortunately, limited by resources to be able to move this enterprise forward at the pace that it could take.”

 Our mission, as advocates, was to storm Capitol Hill to bring attention to the serious underfunding of Alzheimer’s research. Nearly 900 of us showed up in our purple sashes to tell our stories and to ask our legislators to increase Alzheimer’s research funding by $200 million. If we receive this increase, our funding will be $766 million—the most ever invested in Alzheimer’s research.

To put it in perspective—Alzheimer’s is the sixth leading cause of death with one-third of seniors dying with Alzheimer’s or another dementia. Approximately a half million people die each year because they have Alzheimer’s. This deadly disease cannot be prevented, cured, or even slowed. Yet, our nation is taking a pass on investing enough resources to take advantage of the talent, opportunities, and ideas generated by the brightest scientific minds in America. 

Help us make Alzheimer’s a disease of the past. Tell your legislators that we need to invest in America’s future by finding a cure for Alzheimer’s. It can be done; it will be done if we care enough.

We can’t win a war with a plastic sword. One of the health aides gave us a hint. She said that to get funds increased, we had to be visible and audible all year. Don’t let them forget about Alzheimer’s! Nine hundred purple sashes make a statement, but if you want to end Alzheimer’s and couldn’t go to the forum, please make a phone call, shoot off an email, or visit a district office. If we become a big enough pest, Congress will listen.

copyright © April 2014 by L. S. Fisher

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