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05/13/2008: "May is National ALS Awareness Month"


May is National ALS Awareness month and it is a time to remind everyone what ALS is and how it affects not only the patient, but everyone involved with the disease. This year I was fortunate enough to participate in our ALS Awareness day at the Ohio Statehouse. It was a definite learning experience for me. We started with a breakfast and orientation and then each of us were to meet with our State Senators and Representatives but unfortunately neither of mine were available but Chris and I met with their aides. We just told them a little about ALS and some of the obstacles that we are facing. We weren't there to get any bill passed or to lobby for anything, but just to introduce ourselves and to put a face to the disease. The visits went well and we left a packet of information for them to read. After our visits, we met with the entire group again for lunch and discussion with a few Representatives. It was a good experience and I do hope to have the opportunity to do it again. There are many fellow PALS, CALS, and advocates doing the same thing in Washington DC right now. I do want to thank each of them for taking the time and sacrifice to do this important work. Maybe I will be able to do Washington next year. Even if most of us cannot be in Washington right now, anything we do can be a big help such as a letter to the paper, a speech at your club or civic group, or even a mention to your coworkers. I am asking each of you this month to make at least one other person aware of ALS. It does help.....................Debbie



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