CF Foundation Announces Unprecedented Acceleration and Expansion of CF Research, Care and Patient Programs

The Cystic Fibrosis Foundation today announced an unprecedented acceleration and expansion of its research, care and patient programs for the CF community. This action is possible as a result of the sale of the Foundation's royalty rights to CF treatments developed by Vertex Pharmaceuticals Inc. The Foundation received $3.3 billion from the sale to Royalty Pharma.

Nov. 19, 2014 | 3 min read

“This is a transformational moment for the Foundation and the entire CF community,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “These new resources will allow us to supercharge our efforts to help all people with CF live long, healthy and fulfilling lives today and work to find a cure. We could not have taken this exciting step forward without the steadfast commitment and decades of hard work of many volunteers and donors, researchers and health care professionals, together with people with CF and their families.”

The sale is the most recent and significant example of the Foundation's successful venture philanthropy model, through which the organization provides upfront funding for pharmaceutical companies to help reduce the financial risk of developing drugs to treat CF. Funds from any royalties the Foundation receives are reinvested to accelerate further drug discovery and advance its mission to find a cure. The Foundation may receive additional funds depending on the success and further development of CF therapies by Vertex in future years.

The CF Foundation has a proven track record of using royalties to create a robust pipeline of potential therapies that target CF from every angle. This approach has led to tremendous advances in life expectancy, which has doubled in the last 30 years. Nearly every CF drug available today was made possible because of CF Foundation support. While CF was once a disease that largely affected children, today, about half of those living with CF are age 18 or older.

“We have much work ahead of us, but we have a clear road map and are now better positioned to pursue exciting new opportunities,” said Beall.

In addition to increasing its research funding for innovative strategies to target the genetic cause of CF, the Foundation plans to strengthen the specialized care and support that people with CF and their families receive at more than 120 Foundation-accredited care centers across the country. The Foundation will also expand its resources to help people with CF and their families afford costly medications and manage health care coverage and insurance.

Beall continued, “Treating and eradicating this complex, rare disease while continuing to meet the needs of those living with it requires a long-term commitment of time, effort and money.  We still need the support of donors and volunteers to realize our goals. We plan to invest these funds in the wisest way possible: to help people with CF live healthier lives today and have more tomorrows.”

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