Advocacy Brought Us Together

The Hill

On Wednesday, State Directors and Assistant Directors representing the Parkinson’s Action Network (PAN) stormed Capitol Hill to advocate for issues facing our community.  We met with our Senators and many of our state representatives in Congress. Even though I have done this a dozen or so times, the experience is exhilarating and empowering. I don’t deny that walking the miles of marbled corridors left a  few souvenir blisters and left me with a good night’s sleep, but it also gave me a sense of accomplishment.

The experience on the Hill was remarkable but even more wonderful is the camaraderie and friendship generated when we all got together. I thank you all for your advocacy work and the difference you make and strive to make. I truly enjoyed seeing all of you and look forward to our next encounter.  Until then, I wish you well.

About Karl Robb

Karl Robb has had Parkinson’s disease (PD) for over twenty-five years. Karl believes he has had PD since he was seventeen years old and was diagnosed at the age of twenty-three. Now fifty, he is a Parkinson advocate, entrepreneur, inventor, writer, blogger, photographer, Reiki Master, and speaker on PD issues. Karl is the author of the book, A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease. He has been chosen as a blogger partner for the 4th World Parkinson Congress being held this September in Portland, Oregon. He has a bachelor’s degree in English from the University of North Carolina at Chapel Hill. His writing has been featured in The New York Post and he has appeared on BBC radio, the CBS Saturday Evening News, Japanese television, as well as several local Washington, D.C., television stations. Karl is a former board member and a Virginia assistant state director of the Parkinson’s Action Network and a board member of the Parkinson Voice Project. You may reach Karl via email at asoftvoice@gmail.com, visit his blog at www.asoftvoice.com, on Facebook, or contact him via Twitter @asoftvoicepd.

Posted on March 2, 2012, in Education & Support, Parkinson's Disease, Politics, Uncategorized and tagged , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 2 Comments.

  1. It is so good to hear all of the success stories from this year’s Hill visits. I really wish I could have been there walking the halls with you all this year. Thanks to PAN and especially the State Directors and Assistant Directors for putting a face and a voice to Parkinson’s!

    James Trussell – Georgia

  2. I was counted among those who braved the halls of congress. It was a battle to say the least. For as many came in the name of Parkinson’s, many more stumped for their cause’s piece of the pie. I’d like to say that we were the most compelling but many had a sad story to tell. Of course they would argue that funding their cause was warranted but we unselfishly held that total funding of NIH was the greater good for all. We had a few specific issues of our own but in the end, federal funding for current projects guarantees that researchers like Elizabeth, Ravi, Arthur, Pei and so many more get to keep their jobs. Personally, I’ve found a renewed sense of purpose and encouragement that can be summed up in one word: ADVOCACY! See you next year.

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