CF Foundation Highlights Role of the Volunteer Community in Advancing CF Science

Leaders of the Cystic Fibrosis Foundation and dedicated volunteers from the CF community came together last week around a shared commitment to not stop working until a cure is found for every person living with cystic fibrosis.

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The virtual meeting, hosted by the Foundation, focused on the promising future of CF science, plans to improve access to cystic fibrosis care and the critical role that the community plays in raising funds to fuel medical advances.

The audience of more than 200 volunteers and members of the public heard presentations from Maureen Fraser, vice president of field management for the Foundation; Alan Holmer, father of two children with CF and board chairman of the Foundation's Metropolitan Washington, DC chapter; Preston W. Campbell III, M.D., executive vice president for medical affairs for the Foundation; and William R. Skach, M.D., vice president for research affairs for the Foundation.

“What you do is incredibly important for what we do across the world and around the country,” said Skach. Explaining the science behind the Foundation's drug development approach, he said, “We don't want to settle for treating some patients, we want to treat all patients and we are not settling for medications that only partially correct the disease. We want a complete cure.”

For the past thirty years, CF therapies have been directed at treating the symptoms resulting in continuous therapies for people with CF. Now that paradigm is being reversed, Skach explained, and the Foundation is focusing on CFTR modulators or therapies that target the defective CF protein and therefore alleviate the symptoms.

Campbell described cystic fibrosis as, “one of the most amazing stories in medicine today.”

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