What your elected official can do for you

What Your Elected Official Can Do For You

The biggest pubic policy goal of the DMRF is to increase funding for federal medical research for dystonia. However we know that the federal budget is under extreme pressure from many areas.  As a result, as much as they might like to, even the most sympathetic lawmaker may feel reluctant to make a commitment to increasing funding for any purpose.  However, our legislators can do things that will advance our cause with little effort or commitment from themselves. But first we have to know what to ask for.

Armed with the five options below, a dystonia advocate is much more likely to leave their representative’s office with something more than a handshake.  The following will give you a ready response when your federal representative says “I’d like to help you but...”

  1. Ask the legislator to write a letter to the National Institutes of Health (NIH) inquiring about the current status of dystonia research. Writing a letter to the head of a federal agency is a very easy service that an elected representative can provide.  Also offer to provide them with a draft letter if they would like.  (Call the DMRF headquarters and a draft letter will be sent to your representative.) The letter will indicate to the NIH director that the representative is interested in dystonia research.  If a number of such letters are received at NIH it will demonstrate that dystonia research has broad support in Congress, and it could influence how the NIH director allocates funding within the organization.

  2. Ask the legislator to write a letter to another member of their chamber who can influence a legislative goal. Example: A DMRF member who asked their representative why the Genetic Non-discrimination Act was stalled in the House was told “That bill is in a different committee than mine. I can’t do anything about it.”  The DMRF member then asked the representative’s aide if the representative would write a letter to the chairman of that committee expressing support or interest in the bill. The aide stated that the Congressman would certainly consider doing so.  So the situation changed from “I can’t do anything” to “I probably can do something.”

  3. For members of the House, ask them to co-sponsor Representative Danny Davis’s resolution on dystonia. This doesn’t take a lot of work for the member’s staff and expresses the House of Representative’s support for dystonia research.

  4. Ask the legislator to place a statement in the Congressional Record supporting dystonia research. This is another easy thing to do and lets other members of the House and the NIH know that they support dystonia research.

  5. Ask the legislator to write a letter to NIH supporting any grant applications for dystonia research. (Contact the DMRF headquarters for more detailed information.)


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