Kampanya güncellemesiIncrease Funding For ME/CFS So We Can Find a CureNew News: We Made the News!
Mary GelpiCovington, LA, Amerika Birleşik Devletleri
18 Tem 2016
Hi friends, We made the news! But first let me back up and say thank you. THANK YOU. I am humbled and immensely grateful that we are up to 38,000 signatures! For a disease with low funding that most people have never heard of, that’s a big deal. And it’s all because of yall, so please know that your John Hancock is going to do a lot of good. One advocate told me the petition was shown to more than a few Senators in a meeting (including John McCain) during the last set of protests in May and it was of great interest. Woowoo! Second, we made the news! I cried on TV, it’s true. WVUE here in New Orleans aired a five minute segment about life with ME/CFS, mentioned the funding issues, lack of a cure, and the petition! Good stuff. There are so many facets and angles to this disease and its multitude of issues (starting with just the name!) that it could last hours, but there was only so much time. The best part is, it’s out there. More exposure/education is such a crucial part of the cause. I’m hoping that maybe this segment can help others who are sick that may be having a tough time explaining their illness or even validating that it’s real. Many diseases are invisible, this does not mean they’re “in your head.” Having the chance to reveal the importance of issues like these on the nightly news was a gift. Eternal gratitude goes out to Michelle and Rob Masson who took the story on, not ever having heard of this disease, and dedicated a lot of time to understanding it. Not an easy task. Last but not least, we have a new Signature Goal. I know I know, but apparently there is somewhat of a “magic number” for successful campaigns. The professionals at change.org tell me that statistically, petitions with at least 50,000 names are most likely to achieve “victory.” When I started this, that number would have seemed completely impossible to me. But I see how far we’ve come, and I know we can do this. If we rally we can hit 50,000 by September, easy peasy! OK not easy, but doable. Show your grandma, your neighbor, your online chat partner? Chronic illness is pervasive, you really never know. Anyway, I’ll post another update very soon about petition dates, cutoffs and upcoming protests. Until then, please continue to spread the word, and thank you again for signing. You’re helping to give millions of people the chance to live again. Health, Happiness, Love Mary and Monty P.S. Monty made the news and kind of stole the show.
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