The Cystic Fibrosis Foundation is proud to announce our new National Advocacy Chairs, Melissa Shiffman from New York, NY, and Rebecca Schroeder from Coeur D'Alene, ID. Peter Barry, who, along with his wife Amy, has served as the Foundation's National Advocacy Chair for the last five years, announced the news at the Foundation's annual March on the Hill advocacy event on March 19.
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Today, the Supreme Court decided to uphold the Affordable Care Act, allowing individuals who purchase health insurance on exchanges to continue receiving premium subsidies.
On July 8, the White House honored 30-year-old Emily Kramer-Golinkoff as a “Champion of Change” for her role in advocating for the integration of precision medicine into the U.S. healthcare system.
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.
Cystic Fibrosis Foundation Vice President of Therapeutics Development Dr. Michael Boyle testified today at a hearing in front of the House Energy and Commerce Committee's Subcommittee on Health. He urged members to support H.R. 209, the Ensuring Access to Clinical Trials Act (EACT), which would make permanent a law enabling people to participate in clinical trials without the fear of losing critical benefits.
The CF Foundation applauds the Social Security Administration's updated eligibility requirements for disability benefits for people with respiratory diseases, including people with CF.
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.
On Feb. 24 and 25, the Cystic Fibrosis Foundation presented three Legislative Champion Awards to Senator Ron Wyden (D-Ore.), Senator Orrin Hatch (R-Utah) and Congressman Lloyd Doggett (D-Texas) for their ardent support of the CF community and their sponsorship of S. 139/H.R. 209, the Ensuring Access to Clinical Trials Act.
On Feb. 25, members of CF Foundation leadership and advocates from the CF community joined President Obama, National Institutes of Health (NIH) Director Francis S. Collins, Food and Drug Administration (FDA) Commissioner Robert M. Califf, White House staff and other stakeholders at the Precision Medicine Initiative Summit (PMI), hosted by the White House.
The Cystic Fibrosis Foundation's tenth annual March on the Hill saw more than 80 volunteer advocates from 34 states convene in Washington, D.C. to speak with their members of Congress about cystic fibrosis and ways that elected officials can support the CF community and our search for a cure.