Rare Disease Day 2019

I had the honor of spending part of Rare Disease Day 2019 on Capitol Hill, meeting with lawmakers about the issues surrounding medical treatment and research for over 30 million Americans with rare diseases. Congressman Gus Bilirakis and I sat down to record a message marking the occasion. Our Gators vs Seminoles rivalry continues, but we are working together to increase the amount of treatments for over 7,000 rare diseases. Currently, less than 5% have an FDA-approved drug, leaving tens of millions of Americans suffering.

In 2014, I took matters into my own hands, researching and ultimately repurposing a drug for my rare disease. It is my hope through the OPEN Act, we can work with pharmaceutical companies to run clinical trials on products already on the market, to increase the number of options for my fellow rare patients.

The link to the video Congressman Bilirakis and I filmed:

https://www.youtube.com/watch?v=wSg4W00mqks&feature=youtu.be&fbclid=IwAR18NUYapL3Q8Eh5-7fQ3_JeAAF0Ny74TJBYvhJlRWBCbgRHMLpVCa8BbXY