The MD CARE Act
The MD Care Act is up for reauthorization. The MD Care Act was initially authorized in 2001 by Congress for 5 years, and established congressional funding (amount not stipulated) for the following projects:
- The Senator Paul Wellstone Research Centers: There are currently six centers that receive federal funding to support and study the muscular dystrophies.
- MD Star Net: established in 5 states, it tracks the epidemiology, genetics and medical care received by individuals with Duchenne and Becker muscular dystrophy.
- MDCC: Muscular Dystrophy Coordinating Committee which meets annually in Washington DC. The committee is composed of representatives of 4 NIH institutes, the CDC and Department of Defense as well as muscular dystrophy advocates. The committee’s purpose is to track current research funding. It also seeks to address gaps in medical care and quality of life in the all the muscular dystrophies.
The specific language included in the MD Care Act can be viewed at thomas.gov, search under H.R.5265 to see the bill.
Please consider calling or sending a letter to your house representative or senator, to advocate co-sponsoring the MD Care Act. Though much of the language of the bill pertains to Duchenne muscular dystrophy, funding is a win for all, as it will support research that may be broadly applicable. To find out if your representative or senator has already co-sponsored the bill, go to www.thomas.gov and search under H.R. 5265 for the House and S. 2618 for Senate, Click on the bill number and then click the Bill Summary & Status link, and finally click the Cosponsor link to view list of co-sponsors.
It may be most effective to send out an email to everyone you know in a particular state, with the phone numbers of the representatives and senators from that state. Ask them to all call on the same day of the month. Remember, that you and they will be talking to a young staffer, not the actual representative. Though the staffer is often in their early twenties, they are the vital link to the politician and must be treated with respect and courtesy. The staffer will often simply ask for a zip code and listen to why you want the politician to co-sponsor the bill. It is recommended to follow up on the website above, to see if you have had success in obtaining co-sponsorhip and re-email all involved in the effort to give them positive feedback for their contributions.
