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.
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.
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.
The U.S. Food and Drug Administration (FDA) has decided not to approve the use of ivacaftor (Kalydeco®) to treat people with cystic fibrosis ages 2 and older who have one of 23 rare CF mutations, known as “residual function” mutations.