Press Coverage

21st Century Cures Act

The 21st Century Cures Act was a major focal point during my time with The EveryLife Foundation for Rare Diseases. in 2014, Representatives Fred Upton (R-MI) and Diana DeGette (D-CO) introduced the 21st Century Cures Act to spur medical innovation and deliver some much-needed funding to government agencies like the Food and Drug Administration (FDA) and National Institutes of Health (NIH).

From the outset, it was clear that the 21st Century Cures Act would be immensely important to the patient community, but how would I deliver that message? We began with a humble webinar that took place following the official announcement made by Reps Upton and DeGette. We took the information conveyed by Congress and distilled it down in a way the patient community could understand.

As we continued to educate the patient community about this event, we also mobilized them, holding social media campaigns to show support for the legislation (see my “Political Advertisements” section), encouraging advocates to meet with Members of Congress who were on the fence, and staying true to our message on the importance of this bill.

Eventually, our impact led us to the offices of Representatives Upton, DeGette and House Speaker Paul Ryan (R-WI), who turned to us for support from the rare disease community and used our advocate, Max Schill, as the poster-child for the legislation.

Because of our strategy of mobilizing the community and communicating the importance of this legislation to advocates, we were featured on numerous national media outlets, some of which are pictured below.