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Requesting support from Senators and Representatives in the U.S. Congress is an excellent way to focus attention on MSUD research nationally. The National Institutes of Health (NIH) is funded every year by an annual appropriations bill. In the bill, Congress also directs the NIH on how to spend the funding it provides. While Congress doesn't detail exactly how much the NIH should spend on specific disorders - they leave that to the scientists - Congress almost always includes language in a report accompanying the bill that encourages the NIH to focus on a particular disorder. While report language like this doesn't have the force of law, it does represent a direction from Congress that most agencies (including the NIH) will follow.

We called our local Congressman, Representative Jim Saxton (R-NJ), and his staff agreed to meet with us. Through his staff, we asked our Congressman to contact the House Appropriations Committee in support of MSUD research. Rather than asking for a specific dollar amount to be allocated for MSUD research, Representative Saxton simply asked that the Committee include report language encouraging the NIH to support MSUD research efforts. The House Appropriations Committee agreed, and report language supporting MSUD research was included in the NIH's Fiscal Year 2004 budget. The result is that the NIH will most likely be funding some new research projects this year.

Members of the MSUD Family Support Group can have a similar effect by meeting with their own Senators and Representatives or writing to them. In your meetings or letters, talk about your own experiences with MSUD and ask them to contact the Appropriations Committee and request the Committee to include similar MSUD-related report language every year. If the NIH is aware of the continuing interest shown by Congress, the agency will be likely to expend more resources on research related to MSUD.

Editor's note:

A copy of the letter that Representative Saxton wrote to the House Appropriations Subcommittee can be viewed by clicking here. At the end of the letter, Representative Saxton submitted language concerning the need for funding MSUD research. The language was changed in the final report and was as follows: "Branched chain ketoaciduria is a rare inherited disorder that prevents the proper metabolism of the three branched-chain amino acids found in all protein, and can lead to mental retardation, physical disabilities and death. The conferees are aware of modeling research currently being performed on mice, with the goal of finding a permanent cure for the disease. The conferees encourage NIDDK to provide support for this type of research and other branched chain ketoaciduria-related research.Branched chain ketoaciduria is a descriptive name for MSUD, and was used instead of the common name, maple syrup urine disease, which was used in the original request.

CHANGE THE LIVES OF MSUD ADULTS AND CHILDREN

The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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