This month, 15-year-old Molly Bonnell and her sister Emily, 13, who have cystic fibrosis, discovered how easy it is to make their voices heard in Congress -- without leaving their living room.
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A group of 62 enthusiastic teen advocates gathered in Washington, D.C. on June 25 to bring awareness of cystic fibrosis to Capitol Hill. During the 7th Annual Cystic Fibrosis Foundation Teen Advocacy Day, the teens highlighted the vital role that the CF Foundation plays in finding a cure for this life-threatening genetic disease.
Feb. 25 will mark the tenth anniversary of the Cystic Fibrosis Foundation's signature advocacy event, March on the Hill. Nearly 75 advocates will come together in Washington, D.C. to meet with their elected officials on behalf of their loved ones, who are living with cystic fibrosis.
Today, the Cystic Fibrosis Foundation announced plans to improve lung transplantation for people with CF at an Organ Summit, hosted by the White House. The event focused on new and innovative ways to improve outcomes for individuals waiting for organ transplants and to improve support for living donors.
The Cystic Fibrosis Foundation's successful business model was at the center of a congressional briefing in Washington, D.C., today, which focused on strategies for jump-starting drug development for rare diseases.
On March 8, more than 40 Cystic Fibrosis Foundation volunteers from across the nation came together on Capitol Hill to speak out on behalf of their friends and family members with cystic fibrosis.
In an effort led by Congressional Cystic Fibrosis Caucus co-chairs Representatives Edward Markey (D-MA) and Tom Marino (R-PA) and Senator Michael Bennet (D-CO), 37 key members of Congress sent letters to the Social Security Administration (SSA) expressing their concern about a proposed rule that could make it more difficult for people with CF to receive disability benefits.
The Cystic Fibrosis Foundation joined 72 chronic and rare disease organizations to send a letter to President-elect Trump and Congressional leadership.
The Board’s review put Coloradans with CF at the center of the discussion, helping to preserve vital access to Trikafta®.