News

U.S. Rep. Mark Amodei of Nevada will join fellow Rep. Jim McGovern and Sens. Chuck Grassley and Ed Markey in co-chairing the Congressional Cystic Fibrosis Caucus, championing awareness of the rare disease and the Cystic Fibrosis Foundation’s search for a cure.

Nearly 200 people from across the country -- including teens from 38 states -- came to Washington, D.C., on June 27 to advocate for the needs of their loved ones living with cystic fibrosis during the Cystic Fibrosis Foundation’s 11th Annual Teen Advocacy Day.

One hundred fifty advocates, backed by more than 5,000 connections from an additional 1,600 cystic fibrosis advocates across the country rallied behind protections for people with pre-existing conditions, like CF, during the Cystic Fibrosis Foundation’s 13th annual March on the Hill.

Chad Riedy, an adult with cystic fibrosis, served as a witness on Wednesday before the House of Representatives' Education & Labor Committee at a hearing on the threats faced by workers with pre-existing conditions.

On Friday, a federal judge issued a decision in Texas v. United States, finding the Affordable Care Act to be unconstitutional. This decision could ultimately leave people with pre-existing conditions, like cystic fibrosis, without patient protections while also jeopardizing access to adequate, affordable health care coverage.

More than 200 advocates from 32 states traveled to Washington, D.C., on June 28 for the Cystic Fibrosis Foundation’s 10th annual Teen Advocacy Day, which enabled teens to meet with their elected officials on Capitol Hill to fight for access to high-quality, specialized care for their friends and loved ones living with CF.