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Foundation Influences Congressional Agenda on Key CF Issues


CF Foundation President and Chief Executive Officer Robert J. Beall, Ph.D., testifies before the Small Business Committee of the U.S. House of Representatives in support of federal grants for small biotech companies, including many of the Foundation's collaborators.

The CF Foundation's work to promote key CF issues on Capitol Hill has spurred several important resolutions this year. In January, as part of the Foundation's ongoing commitment to advancing critical CF research, President and CEO Robert J. Beall, Ph.D. testified before the Small Business Committee of the U.S. House of Representatives in support of the Small Business Innovation Research (SBIR) program. SBIR provides federal grants to small biotech companies, including many of the Foundation's collaborators. For small biotech companies, the program's funds are particularly important to support early stage drug discovery research, which is often the most difficult to fund. 

Reinforcing Beall's message to Congress to advance CF research, a group of 41 volunteer advocates from 20 different states across the country met with their elected officials at the annual March on the Hill in March.  Led by National Advocacy Chairs, Margarete and Marc Cassalina, advocates discussed issues of importance to the CF community with 65 members of Congress and their staff.

Thanks to their efforts and in response to Beall's testimony, the U.S. House of Representatives passed legislation to authorize the SBIR program in April, and included a provision requiring that special attention be given to research for rare diseases such as CF when SBIR grants are awarded. "We congratulate members of the House for recognizing the importance of funding for rare disease research and how critical these dollars are for cystic fibrosis and other illnesses," said Beall.

Foundation volunteers also played an important role in promoting a second resolution, designating May as National Cystic Fibrosis Awareness Month, which passed in the U.S. Senate in April. Compelled by the visits, letters and phone calls of volunteers and the Foundation's success in combating the disease, many members of the Congressional Cystic Fibrosis Caucus signed onto the Congressional Cystic Fibrosis Awareness Resolution.  The resolution still must pass in the U.S. House of Representatives before it may be enacted.

 "The chance to tell my Congressman or Senators what they can do for CF is empowering," said David George, from Rochester, N.Y., whose child has CF and who attended the March on the Hill. "We all know that our elected officials represent us, but it's up to us to let them know how they can help. I hope everyone in the CF community will add advocacy to the list of things they need to do to find a cure for CF."

Learn more about how you can be a voice for CF by visiting cff.org/GetInvolved/Advocate/ and sign up to receive the Foundation's advocacy newsletter.