Myotonic Dystrophy Foundation

February 28, 2008

In mid-February MDF board members Todd Stone and Shannon Lord learned from Pat Furlong and her Duchenne advocacy group, Parent Project Muscular Dystrophy, how to lobby on Capitol Hill in an effort to get the MD CARE Act of 2001 re-authorized. The original bill mandated that more funding be directed toward muscular dystrophy research for the next five years. Out of that mandate, six Muscular Dystrophy Centers of Excellence at U.S. medical centers were established, including one at the University of Rochester where a major focus is myotonic dystrophy. Tremendous progress has been made in understanding all muscular dystrophies since the establishment of these centers. With the MD Care Act’s expiration, the Duchenne parents have once again galvanized efforts to get it re-authorized by Congress in order to guarantee continued interest and funding from the NIH. Specifically, affected family members were visiting Congressmen’s offices and seeking co-sponsorships for the re-authorization of the Act.

The PPMD hopes to see the bill processed prior to the election next fall. Stay tuned for more information on the outcome of this effort.