More than 60 teens from across the country — 25 of whom live with cystic fibrosis — participated online and on Capitol Hill in the Foundation’s Teen Advocacy Day to advocate for the CF community.
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Vertex’s copay assistance changes add an undue burden for people living with an already expensive, challenging lifelong disease.
After more than six years of dedicated service as co-chair of the Congressional Cystic Fibrosis Caucus, Rep. Edward Markey (D-MA) has stepped down from the post as he assumes new responsibilities in the U.S. Senate. Rep. Jim McGovern (D-MA) will replace Markey, joining Rep. Tom Marino (R-PA) as co-chair of the Caucus.
After more than six years of dedicated service as co-chair of the Congressional Cystic Fibrosis Caucus, Rep. Edward Markey (D-MA) has stepped down from the post as he assumes new responsibilities in the U.S. Senate. Rep. Jim McGovern (D-MA) will replace Markey, joining Rep. Tom Marino (R-PA) as co-chair of the Caucus.
More than 60 CF Foundation volunteers came together in Washington, D.C. to speak with their elected officials on behalf of friends and family members affected by the disease during March on the Hill, the Cystic Fibrosis Foundation's signature annual advocacy event.
Teen volunteers from 27 states across the country gathered in Washington, D.C., on June 26 to advocate for friends and loved ones who have cystic fibrosis during the Cystic Fibrosis Foundation's sixth annual Teen Advocacy Day.
In 2014, the Cystic Fibrosis Foundation and advocates across the country played a vital role in shaping issues important to the CF community. CF advocates attended more than 500 meetings with elected officials and sent them more than 60,000 messages advocating on behalf of people with CF.
Since I could remember, my sister shared her CF story to raise awareness, and she inspired me to do the same. Now, with this year's Teen Advocacy Day, we finally get to advocate together.
Having two sons living with cystic fibrosis, I struggled for years with the financial burdens and restrictions of the insurance market. Since the Affordable Care Act was passed in 2010, I no longer have to worry about lifetime caps and astronomical premiums -- two issues that caused enormous grief for my family.
When Brady was diagnosed with CF, I felt like I'd been thrown into a river without a paddle. But then I realized my “paddle” was CF advocacy, and it could help steer our boat in the right direction.