Emily’s sister, Julia, traveled to Washington D.C. to take part in the Cystic Fibrosis Foundation’s Teen Advocacy Day on Thursday, June 28. We asked her questions about her experience lobbying in DC. Check out Julia’s responses.
What is the CFF Teen Advocacy Program?
The CFF Teen Advocacy Program is a chance for teens with siblings, parents, friends or other loved ones affected by CF toadvocate for the support of Cystic Fibrosis research in congress.
Why is advocacy important for Cystic Fibrosis?
Cystic Fibrosis is a rare, orphan disease, which means it only affects a small percentage of people. As a result, there is less incentive for pharmaceutical companies to fund research for CF. That means that most of the money to fund research comes either from grassroots fundraising by people like us with a connection to someone with CF or from the government.
How and why did you get involved?
As a sibling of someone with CF, I feel it is my responsiblity to do everything in my power to make my sister’s life as long and fulfilling as possible. When I heard about the CFF Teen Advocacy Program, I thought it was a phenomenal way to speak up and expand others’ knowledge about this devastating disease and to hopefully increase support for CF research in congress.
What were your goals with lobbying congress?
There were three main goals of the CFF’s Teen Advocacy Day this year.
1) Thank congress for voting to pass the Expanding and Promoting Expertise (EXPERRT) bill, which allows the Food and Drug Administration (FDA) to review new drugs for rare diseases (such as CF) more easily by allowing them to reach out to experts outside of the FDA.
2) Encourage congress to save parts of the Health Care Reform Act that allows access to specialized, expensive CF care, whether or not the entire law remains.
3) Encourage congress to increase funding for the FDA, the National Institutes of Health and the National Center for Advancing Translational Sciences.
How did you prepare for the experience?
I read multiple article to prepare for the experience and to expand my knowledge. Many of the articles can be found in the Advocacy Action section of the CFF website.
Who did you meet with in congress?
I met with the staff of the following Pennsylvania Representatives: Rep. Mike Kelly, Rep. Jason Altmire, Rep. Glenn Thompson, Rep. Jim Gerlach, Rep. Patrick Meehan, Rep. Michael Fitzpatrick and Rep. Bill Shuster.
How was your experience?
Teen Advocacy Day was an incredible opportunity that I will never forget. I honestly believe that I made a difference by increasing awareness of CF. In fact, the day after I met with Rep. Meehan, I received an email saying that he agreed to joined the CF caucus! That was a real tangible demonstration of the impact my advocacy efforts had.
It was also an amazing experience meeting other teens who are affected by the disease. I hope to attend next year!!
Keep up the great work Julia! We are so proud of you!