In the last few weeks, you have probably seen my posts on Twitter, Facebook and Instagram about HR 971, the OPEN ACT. After meeting with Congressman Bilirakis and discussing the bill, I am throwing 110% of my efforts behind making sure it passes. Continue reading
I am so excited to share with everyone my trip to DC for Rare Disease Week. It was a wonderful opportunity to meet with other rare advocates as well as healthcare industry leaders and political figures to discuss important legislation. Personally, it was a life changing experience where I finally felt that everything I have gone through in the last 313 days can have a positive outcome. While my situation is unique and I have a rare disease, my decisions can be used to trigger the changes necessary to allow all rare patients a chance at a better life.