Saturday, June 20, 2015

What Survivors?

I’ve been seeing images of a “Limited Edition” T-shirt for Alzheimer’s Awareness. The shirt says, “Supporting the Fighters, Admiring the Survivors, Honoring the Taken, And Never Giving Up Hope, Alzheimer’s Awareness.” People seemed to be excited about buying these T-shirts.

I don’t want to burst the bubble of enthusiasm, but this shirt certainly does not promote Alzheimer’s awareness. At our annual Walk to End Alzheimer’s, we cannot have a victory lap for our survivors. The cold, hard fact is that Alzheimer’s leaves no survivors.

Alzheimer’s is the sixth leading cause of death in the United States and the only one in the top ten that cannot be prevented, cured, or even slowed. Twenty million Americans understand this harsh reality: five million with the disease and their fifteen million unpaid caregivers.

Alzheimer’s does have fighters—millions of them. We have warriors with the disease and care partners who raise awareness and dollars so that we can have survivors someday. These brave people share their stories, their struggles, their highs, and lows as they live life to the fullest. They celebrate each moment of joy and refuse to cave in to despair.

Several years ago, I met a forty-year-old woman in Washington, D.C., who had early onset Alzheimer’s. As we told our personal stories to our senators and representative, she said, “I know it’s too late for me, but I want a cure for my children. I don’t want them to have to go through this.” She is gone and has been for several years, but we continue her fight to make her wishes come true.

Family members and loved ones honor the taken. Jim was taken before his sixtieth birthday. We honor the loved ones we’ve lost each time we join a Walk to End Alzheimer’s. We honor them by becoming advocates, or “voices,” for Alzheimer’s research and hounding legislators to push for increased funding.

Advocacy makes a difference! This week we received word that due to the relentless dedication of Alzheimer’s advocates, increased research funding is making its way through the legislative process. The House Labor, Health and Human Services Appropriations Subcommittee has approved an additional $300 million in Alzheimer’s research.

Harry Johns, Alzheimer’s Association CEO said, “Should this increase become law, it will be the largest annual increase ever in federal Alzheimer’s research funding. Following today’s actions, the full House Appropriations Committee is expected to consider this legislation next week. We also anticipate that the Senate will begin to move their own version of the FY16 Labor-HHS bill next week.”  

Advocates will never give up hope! The National Plan to Address Alzheimer’s Disease sets forth a goal to find a cure or effective treatment by 2025. With adequate funding to support the bright scientific minds at work on a cure, our goal is within reach.

When our work is done, I’ll be at the front of the line to buy a T-shirt that has “Admire the survivors” on it. Until then, we need to keep the momentum going and stick to the Plan to find the elusive cure and/or effective treatment for Alzheimer’s no later than 2025, but hopefully much, much sooner.  
Copyright © June 2015 by L.S. Fisher
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