Advocacy and Public Policy

So, What is Advocacy and Why Should You Care?

Advocacy is simply the act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support.  As it relates to cystic fibrosis, it is communication between you, a constituent, and your elected officials regarding issues that affect all people living with the disease. This communication can range from sending a pre-written letter to a representative via www.cff.org, to building a long term relationship with targeted elected officials, to in-person meetings with legislators.

Without advocacy efforts, many elected and other public officials would be unaware of cystic fibrosis and the toll it takes on patients and their families.  By using advocacy to raise awareness and promote the CF Foundation’s public policy agenda, laws and regulations are created to advance CF issues.  Advocacy also enables us to educate our elected officials about how pending legislation could impact the entire CF community.

The Foundation’s main public policy issues are:

  • Advance cystic fibrosis research and drug development
  • Promote access to care
  • Raise awareness of cystic fibrosis


The Cystic Fibrosis Foundation is the world’s leader in the search for new treatments and a cure for cystic fibrosis. Real progress is being made, with a robust pipeline of potential therapies, in various stages of development and testing, aimed at targeting the disease from every angle.

Although great strides have been made in the search for new treatments and a cure, the lives of young people with cystic fibrosis are still cut far too short. Support for federally funded research and drug review programs can help extend the lives of those with the disease.

This is a critical time in our nation’s history as our elected officials grapple over next year’s budget.  We need everyone in the cystic fibrosis community – patients, families, care center staff, foundation staff and friends – to take action to protect NIH (National Institute of Health) and FDA (Food & Drug Administration) funding from the devastating budget cuts that are scheduled to take effect at the end of the year.


Just sign up at www.cff.org/GetInvolved/Advocate to receive action alerts and learn more.  Join us in our efforts to ask our public officials to represent our interests, not just those groups with large lobbyists behind them. 

Trina Fontaine, GNY CFF Staff; US Representative Nita Lowey of New York State’s 18th District; and,
Nick Stephens, GNY CFF Board
of Directors

Please contact Trina Fontaine at tfontaine@cff.org or 914-993-1460
with any questions.