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National EB Awareness Week

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  • Gena
    Greetings! Largely due to your efforts, 31 co-sponsors are in support of Congressman Tim Bishop s House Bill (HRES335) to support the ideals and goals of
    Message 1 of 1 , Mar 2, 2006
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      Largely due to your efforts, 31 co-sponsors are in support of Congressman Tim Bishop's House Bill (HRES335) to support the ideals and goals of "National Epidermolysis Bullosa Awareness Week," and 11 co-sponsors have joined Senator Schumer on the companion Senate resolution (SRES180). Our goal is to push on for Hearings and a vote on this pending legislation that is so important to the entire EB community.

      The most important timeframe in whether a Bill becomes law or not is right now, when it's in committee for consideration. The reality is that only a few hundred resolutions become law out of an average of 5,500 Bills that are introduced by placing them into the "hopper" in the House Chamber - so this goal for the EB community may appear somewhat daunting. However, when you consider that such a proclamation occurred in 1984 (Public Law 98-463) and 1986 (Public Law 99-459)... and a similar Bill has been passed in Canada (Bill C-230), we know that we can find success if we persevere. We must convince the 109th Congress to make EB Week a reality for the long haul!

      I've just forwarded mail campaign project details to Dennise Joseph, Shirley Jones, Allyson Anderson, Barbara Stowe and Robin Eckworth, who will be working with me on this "TEAM DebRA / EBMRF" goal! The Peshkur family also continues to be very involved in advocating this legislation.

      Earlier this week, I received a very encouraging email about our campaign from Dr. Stephen Katz, Director of NIH National Institute of Arthritis and Musculoskeletal and Skin Diseases, a man who has promoted EB-related funding for many years. With people like this behind us, and a harmonized effort by our two incredibly important nonprofit organizations, we simply can't lose.

      I encourage anyone interested in helping make "National EB Awareness Week" a reality to email me at otm@... . If you have already written to, faxed, emailed, and/or phoned your legislators and they have not yet co-sponsored, please let me know and I can give you some additional suggestions. There are also several legislators who have the ability to find this subject matter of sufficient importance to set a date for hearings, and bring Bill H.RES.335 to a vote. If you are interested in communicating with these leaders, please email me and I'll be happy to give you names and contact information!

      By the way - for God knows what reason, I learned today that I've been "banned by the moderator" of several yahoogroups: EBWorld; EBangels; EBcaregivers; and ebdatabase. Not blocked - BANNED. As anything I have ever posted at any of these groups has been "informational and supportive," and the above is the only message I've tried to post in recent history, I can only presume that this is personal... which is fine, as I'd sooner consort with those at Auschwitz than those in the Third Reich! :) Please pass on the above "informational and supportive" information if you are still a member of one of these groups.

      I have created a new yahoogroup, "EB Force For Action." You are welcome to have a look and join if you're interested. Rules are simply based on YahooGroup Terms of Service, not my own opinions.

      Thank you!

      All the best,
      Gena Gruschovnik

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