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As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy. They contacted everyone on their contact list and asked them to participate in In-District Lobby Days. I simply registered on their website and notified them of my availability so that they could schedule appointments for me with my Senator and Congressman.

I visited Senator Kirsten Gillibrand’s office as a representative of our group, and was joined by others lobbying for their respective rare diseases. We met with Senator Gillibrand’s senior advisor, who spent over half an hour with us listening to our stories and our “asks.” I highlighted the need for sponsorship for the Medical Equity Act, which would mandate coverage of metabolic formulas and low protein foods.

When I met with Congressman Engel, it was me alone with him and his Chief of Staff! We shared family stories, talked a bit about politics in general, and then got down to my specific concerns. Congressman Engel is a member of the Rare Disease Congressional Caucus, so I knew I had a supporter sitting in front of me. He asked me to tell him about MSUD, which I did in great detail. I then told him about this specific bill and asked him to consider co-sponsoring the legislation. Of course he said he needs to read the bill first, but did assure me that this was a piece of legislation he was likely to support. I also emphasized the need to fully fund the FDA and NIH, which he agreed was vital to the health of our nation. Unfortunately I forgot to ask for a picture!

Advocating with my elected officials was easy to do and, truthfully, fun! When people hear our stories, they want to help. I urge every one of you to try it!

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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