“I truly felt that our representatives were listening closely when I told them my story of being diagnosed with and treated for pemphigus vulgaris.” On Thursday, September 22, I joined 350 advocates on Capitol Hill for the Rally for Medical Research. Our main goal was to encourage members of Congress to continue robust, sustained, and predictable funding for the National Institutes of Health (NIH). Because I live in Washington, DC, a city without a vote in Congress, I was assigned to the group from Montana.
Along with a University of Montana biologist and a cancer research advocate, I met with Sens. Jon Tester and Steve Daines, and Rep. Ryan Zinke. All three members were supportive of our efforts to maintain NIH funding, especially Sen. Tester, who seemed to have a vested interest in medical research. In addition to our general request for NIH funding, I stressed the importance of cutting edge research on rare diseases and emphasized the significance of the Open Act, which incentivizes pharmaceutical companies to make treatments available off-label.
Of my three visits to Capitol Hill as a rare disease advocate, this is the first time I met with the members themselves rather than only their staff. It was a humbling experience but also a powerful one. I truly felt that our representatives were listening closely when I told them my story of being diagnosed with and treated for pemphigus vulgaris. Meeting our lawmakers in person and telling our stories makes all the difference!