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Crookston Times - Crookston, MN
  • Is there a more worthy cause than curing Alzheimer's?

  • Choosing what gets funded and what doesn't is no easy task.


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  • As science finds cures for many diseases, people live longer. However, the longer we live, the more likely we will acquire the disease for which, as yet, there is no cure: Alzheimer's.
        If you are over 85, there is a 50% chance that you have Alzheimer's.
        According to the Alzheimer's Association, the disease costs our medical system an astonishing $200 billion per year.
        That number does not include the economic cost in lost wages of the whopping 15 million Americans who provide unpaid care for somebody with Alzheimer's.
        Last week, seven hundred people with a direct stake in finding a cure gathered in Washington D. C. at the National Alzheimer's Advocacy Forum to urge Congress to increase funding for research and education.
        Dozens of those present were in early stages of the disease. Several sufferers gave moving speeches, including legendary University of Tennessee women's basketball coach Pat Summitt, who was diagnosed one year ago.
        The remainder of the crowd were nearly all present or former caregivers of people with the disease.
        I felt a bit out of place. Alzheimer's is rare in my family. So, I just sat and listened to people's stories.
        One man I met spent his teen years taking care of his mother, who contracted the disease in her 40s. After she died, his two brothers also were diagnosed.
        An elderly couple recently wed after losing both their spouses to Alzheimer's. They now volunteer to provide in-home respite care to caregivers who all too often wear themselves out caring for their stricken loved one.
        Although the stories flowed along the sidelines, the Forum itself was all business: How do we get Congress to act?
        Speakers included a former Congressional chief-of-staff. She schooled participants in the art of cornering a member of Congress.
        Attendees learned the right words and phrases to use on their member of Congress from Frank Luntz, a world-renowned pollster.
        Debilitating. Dreadful. Costly. Breakthrough. Tipping point.
        Apparently, those are the poll-tested words that will get a politician's attention.
        Eventually, each delegation (Minnesota and North Dakota's chapter had the largest representation) broke down into small groups and practiced an actual meeting with member of Congress.
        On the final day, bedecked in purple sashes, the 700 people descended upon Capitol Hill and demanded that their member of Congress support Alzheimer's research.
        With competing funding priorities and with concerns over deficit spending, proposals for new spending aren't always met with a friendly ear.
        "Where is the money going to come from?" is the likely response from members of Congress and their staffers.
        The newly-trained Alzhiemer's advocates were coached to respond with dire statistics of how much Alzheimer's disease is going to cost us if we don't find a cure.
    Page 2 of 2 -     Even delaying the onset of the disease five years would save billions.
        The night before the march to Capitol Hill, a gala dinner was held at the Renaissance Hotel a few blocks from the White House.
        Actress Jane Seymour spoke, as did several members of Congress, past and present, including one who was recently diagnosed. Maria Shriver helped emcee.
        The goal of the dinner was to fire people up to go hit Congress hard the next morning to fight the fight against a devastating disease.
        I was moved by stories told, particularly by a teenage brother and sister from Minnesota whose mother, a victim of early-onset Alzheimer's, no longer recognizes them.
        The three-day trip was an eye-opener.
        My thought going in was that allocating money for research to fight Alzheimer's is a no-brainer.
        It soon became apparent that even such an obviously worthy cause has to be pressed with incredible vigor for anything to get done.
        What troubled me is that it takes such a well-oiled, well-funded, well-trained army to bring attention to even the most necessary and worthy cause.
        As I went down the elevator to the final dinner, I struck up a conversation with a couple from Georgia. Their name tags were of a different color, so I knew they weren't with the Alzheimer's group.
        "What brings you to Washington?" I asked.
        "We're here for the Ophthalmology Advocacy Day," one replied.
        "We're being trained to go to Capitol Hill and get funding for eye screening and testing that could save the government billions."
        I didn't think I'd ever feel sorry for a member of Congress. However, as I realized how many visitors representing good causes each member must see each day, I came close.
        Can you imagine choosing between all of the worthy and urgent causes which compete for federal dollars?
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