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The Paul D. Wellston MD CARE Amendments Act of 2013 was introduced into the U.S. House on February 8 by Eliot Engel (D-NY) and Michael Burgess (R-TX), and the U.S Senate on February 14 by Amy Klobuchar (D-MN) and Roger Wicker (R-MS). The act was originally passed in 2001 and reathorized in 2008, and has been a critical force for multiplying funds available and bringing more attention to the funding need.
Much of these funds are directed at cooperative research rather than the cost of care for those with muscular dystrophies. As those with FSHD have gained more of a voice, more research such as that supported by the Wellstone Centers have been directed toward FSHD. The new bill finally calls out FSHD, among others, by name.
In the House the bill has been sent to the Committee on Energy and Commerce (see current status).
Spend a moment to contact your representative to voice support for this important bill. Find Your Representative.