05 Jun Chris Carrino heads to Capitol Hill to advocate for FSHD
On May 8, 2024, Chris and Laura Carrino joined with members of the FSHD Society for a trip to Capitol Hill to meet with Senators, Congressman, and staffers in an effort to advocate for FSHD.
With promising clinical trials underway, there is an urgency to introduce these lawmakers to FSHD patients and build relationships that will guide our future efforts.
While there, they also presented a resolution to designate June 20th as World FSHD Day.
Chris said “Ever since I put my name on a foundation, I always saw myself on Capitol Hill lobbying congress for an FSHD treatment. And he we are. It’s hard to quantify the results of our meetings. I don’t know how much we were able to accomplish, but I do know this. If we don’t try, we won’t get anywhere. In the meetings, our goal was to humanize FSHD and express the urgency for a treatment. The congressman and staffers were attentive and asked questions. I felt good about our meetings. It was certainly a rewarding and hopefully fruitful experience.
