Monday, December 14, 2009

You've made a difference for people with CF:

2009 has been a banner year for raising CF awareness. Check out the many ways you've helped:
  • 102 Members of the U.S. House of Representatives co-sponsored the Improving Access to Clinical Trials Act of 2009 (H.R. 2866). The House of Representatives included the bill as an amendment to the larger health care reform bill passed in November. The CF Foundation continues to work with both the House and the Senate to pass the bill.
  • 20 new Representatives became members of the House Congressional Cystic Fibrosis Caucus – bringing the total to 147 and making the CF Caucus one of the largest in Congress.
  • In September, you restored funding to New York’s CF Adult Care program after it had been targeted for elimination.
  • In October, your efforts helped protect New York CF patients’ ability to use the Cystic Fibrosis Services Pharmacy by encouraging New York Governor Paterson to sign legislation to allow people with CF in that state to continue getting their medications through the Pharmacy.
  • In June, all 50 states, along with Washington, D.C., began requiring that all newborns be automatically screened for cystic fibrosis – a big win for CF advocates.
  • In May, in a Senate Appropriations Committee hearing on biomedical research, Senator Richard Shelby (R-AL) and Acting NIH Director Raynard Kington, M.D., Ph.D., acknowledged the CF Foundation as a leader in rare disease research.
  • In April, you protected the Idaho Adult CF program from funding cuts that would have reduced health care services for people with CF in the state.
  • In January, after hearing from advocates like you, Senator Patty Murray (D-WA) spoke of the importance of the Children’s Health Insurance Program to Brenna Krug, a 6-year-old child with CF from Marysville, Wash. during the Senate debate on the program. In February, President Obama signed the bill into law, expanding the healthcare program to an additional 4 million children, including many with CF.
Thank you for your support!