BeckerMuscularDystrophy.org
Title
Becker Muscular Dystrophy
Description
Texas with my wife and daughter. I started the becker muscular dystrophy website because there was no site I could find that was exclusively for people with becker muscular dystrophy.
federal government for more spending on muscular dystrophy research and have had some successes, though I have only been one person out of many that are working to get more federal funding for this disease. We still have a long way to go to get what funding we need. Here are some of the specific things I have done over the years.
I helped lead the charge for the MD CARE Act which passed the Congress and was signed into law in 2001, visiting over 15 Congressional offices from 1999 to 2001. I met with the President’s Special Advisor on Health Care at the White House to talk about the importance of the President supporting the MD CARE Act and the importance of embryonic stem cell research in 2001. I helped push for a hearing before the Senate Health Education Labor & Pensions committee chaired by Senator Spector in 2001. A 1999 meeting I had with Majority Leader Dick Armey was also helpful in laying the groundwork for the MD CARE Act. I worked to get MD organizations like MDA and The Parent Project to support an organized lobbying effort on behalf of patients with muscular dystrophy (This had never been done, which probably explains why MD funding is so low.) In addition, here in my home state I led the effort to pass House Concurrent Resolution 8 through the Texas Legislature in 2001 session, memorializing Congress to increase funding for Muscular Dystrophy. It was passed and signed by the Governor. In 2003, I was appointed by Secretary of Health and Human Services Tommy Thompson to serve on the Muscular Dystrophy Coordinating Committee at the National Institutes of Health. Also, in 2003 I became a founding member of Texans for the Advancement of Medical Research, an organization dedicated to keeping stem cell research legal in Texas. In 2006, I was reappointed to the MDCC by Secretary of Health and Human Services Michael Levitt. In 2006, I received the 2006 MDA Personal Achievement Award for the State of Texas. Thanks to the efforts of all muscular dystrophy advocates, federal funding has quadrupled in the last five years to over $40 million in FY06 .
