Sunday, January 28, 2007

GINA Hearings to begin this week. Email the committee members!

Apparently 100 letters of support were collected from HD families by HDSA's efforts in support of the GINA legislation. With presumably 30,000 family members in the U.S. impacted by this disease one would assume that we would be able to provide a few more letters than that - especially regarding an issue that is so vitally important. It WAS a short notice, so one must factor that in.

HDSA is now collecting letters to send to the Speaker of the House, the Majority and Minority leaders of the house and the Chairman and Ranking Members of all three committees who will debate GIBA before it reaches the floor.

HDSA is generously providing a form template for the email, but according to what I've read, if we can each provide a custom letter, incorporating the essence of HDSA's form letter but personalizing it so that the members know that we are REAL people, then HDSA's efforts will be much more effective. HOWEVER - if making the effort to customize it is a mental block then please send at least the template. Any action is at least a billion times better than no action at all. (See the HDSA Alerts for template information.)

Thanks to some friendly birds at the High Q Foundation and The Alliance for Genetic Fairness I found out that the Subcommittee on Health, Employment, Labor and Pensions will be holding a hearing on the topic of "Protecting Workers from Genetic Discrimination". This is is scheduled at 10:30 a.m. in room 2175 Rayburn H.O.B. If you can be there it would be really good to have some bodies in the room.

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