Advocacy

Advocacy 101

Can I advocate?

Everyone can be an advocate for the issues they care about and every US citizen has representation on Capitol Hill (your U.S. Representative and two U.S. Senators).

Can I contact my Representative or Senators?

Yes, you can contact your Representative or Senators at any time, in their district or state offices or in Washington D.C.  You can also contact your Members through letters, emails, faxes, and phone calls.

To find out who your U.S. Representative is, please go to www.house.gov and search by zip code (top right of the website).  Contact information is also available here.

To find out who your U.S. Senators are, please go to http://www.senate.gov/general/contact_information/senators_cfm.cfm and search by state.

What should I say if I have the opportunity to speak with my Representative or Senators?

Keep it short and make it personal, Members of Congress and their staffs are extremely busy and deal with hundreds of issues.  If you have the opportunity to speak with the Member or their staff be sure to make your story compelling and urge them to support CMD research.  At the end of the day, they will remember you.

I have contacted my Members of Congress….Now what?

Follow-up, follow-up, follow-up!  Members and their staffs are most engaged with the people that stay in contact with them.  This does not mean sending them a letter every week or calling every day, but instead one might reach out to their office contact once a quarter or every six months.   It could be a simple progress update on how your loved one is doing with CMD and a reminder to please keep working to get the research dollars so desperately needed to cure CMD.

With all this Capitol Hill gridlock, does anything make a difference?

YES!  Despite all the issues Members of Congress deal with on a daily basis, the importance of research is something many Members can agree on (for the most part).  However, there are many advocacy groups that want support for their specific research cause and so its even more important that Capitol Hill hears about CMD in order to not get left behind.

While it’s a lot of effort and repetition, it does make a difference.

Click here to download a congressional letter template

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.


 

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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