Friday, April 26, 2013

Advocates and Avocados


David Hyde Pierce, who has been a champion for Alzheimer’s began this year’s forum by joking about how the word advocate in Spanish is abogado, which sounds like “avocado.” It was his observation that “Avocadoes are like Alzheimer’s advocates because they are irresistible, and they have big nuts.” About Alzheimer’s disease, David said, “It’s not going to stop until we stop it.” Then, the most unusual call to action I’ve heard in the thirteen forums I’ve attended, “Avacados, let’s roll!”

Of course, we all laughed at David Hyde Pierce’s jokes because, let’s face it, he knows how to deliver a punch line. Jokes aside, just like us, he is here on a mission—flying back and forth from New York to take part in this forum. Because, like the more than 900 advocates packed into the large ballroom, he has a personal stake in finding a cure for this disease. He’s met Alzheimer’s and knows what a cruel disease it is.

The conference, as usual, was a whirlwind of activities. Dr. Collins, director of NIH, announced that in a unique step, NIH has designated $40 million of its 2013 budget for Alzheimer’s. In addition, an indication of the nation’s attention to the underfunded Alzheimer’s research funds, the president’s 2014 budget allocates $80 million to research.

My Mom and Glen Campbell
Glen Campbell joined us for the National Alzheimer’s Dinner. He entered the room a few feet from me, but I couldn’t get my camera turned on in time to get a picture. After dinner, I managed to work my way to the front of the crowd to get a picture of him and my mom. More important than the photo ops was the presentation of the Sargent and Eunice Shriver Profiles in Courage Award to Glen Campbell and his family. The “Rhinestone Cowboy” strode to the stage and accepted his award with humility that belied his outer showmanship.

After several other deserving awards, the Outstanding Advocate of the Year Award was presented to Dr. Ron Grant who has early onset Alzheimer’s. He thanked God and the Oklahoma/Arkansas Chapter for giving him the courage to face the disease. He said, “We live in the greatest nation on the planet, but I have to ask—in such a great nation, how many more families are going to have to suffer the devastation of this disease?” Grant concluded with a break in his voice, “How many more of us are going to have to die before we stand up and say enough?”

That, I would say, is the most important question of the entire forum. How many precious lives have been lost to the costliest disease in the United States? Officially, 83,437 died from Alzheimer’s in 2010. Other health conditions are often listed as the cause of death although the reason for the condition is caused by Alzheimer’s. In 2013, an estimated 450,000 will die with Alzheimer’s.

 We ended the conference part of the forum armed with statistics and tactics, but the most important element of our visits to the hill would be the power of our personal stories. As this abogado “avocado” prepared to charge the hill, I left the room with Dr. Grant’s haunting question echoing in my brain, “how many?”

Copyright by L.S. Fisher, April 2013
http://earlyonset.blogspot.com

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