Senator Richard Shelby (R-AL), a champion of CF research, spoke at length about advances in CF research during a Senate Appropriations Committee hearing last week. He addressed the critical need for increased research funding for rare diseases like CF.
During the hearing, Acting NIH Director Raynard Kington, M.D., Ph.D., and other NIH institute directors, praised the work of the CF Foundation and the CF community. “The CF community is in many ways held up as a good example of how a community affected by a disease can work collaboratively with the research community to facilitate translation,” said Kington.
Also during the hearing, Shelby, Kington and Elizabeth G. Nabel, M.D., director of the National Heart, Lung, and Blood Institute, suggested that NIH mirror the Foundation's successful clinical trials network (also known as the Therapeutics Development Network), and its research model to gain better results for rare disease research.
“If we take a minute and reflect on the progress that's been made in cystic fibrosis, it's been remarkable over the past decade,” Nabel said. Nabel also cited recent media coverage the CF Foundation received in The New Yorker.