The teens met with senators, representatives and congressional staffers to advocate for more resources dedicated to cystic fibrosis research, treatment and care. Specifically, the teens asked their members of Congress to increase funding for the National Institutes of Health and the Food and Drug Administration, and to consider joining the House CF Caucus and the newly-formed Senate CF Caucus.
“It's been amazing to see how this event has grown since our first Teen Advocacy Day in 2009, not only in the number of participants, but in its effectiveness in advancing our policy agenda,” said Mary Dwight, senior vice president for public policy and patient assistance programs at the Foundation. “But what makes it one of my favorite days of the year is the power of the CF community coming together for a common goal, to cure CF.”
During Teen Advocacy Day, the co-chairs of the Senate Cystic Fibrosis Caucus, Senators Charles Grassley (R-Iowa) and Edward Markey (D-Mass.), celebrated the launch of the caucus by hosting a “mock hearing.”
Panelists included Mara Cray, a young adult with CF; Erin Baranko, a CF advocate and intern at the Foundation; Joe O'Donnell, a CF advocate and parent; and Preston W. Campbell, III, M.D., president and CEO of the Foundation. Senator Michael Bennet (D-Colo.), a member of the Senate CF Caucus, also attended the event and showed his support for the CF community.
The hearing focused on the challenges of living with the disease and ways that Congress can help people with CF live longer, healthier lives.
“With advocacy, we get to watch our efforts materialize into real progress,” said Erin Baranko. “Each year we return to the Hill, our story is a little more hopeful and the prospect of a cure is a little more tangible.”
The House CF Caucus and the Senate CF Caucus have joined together to form the Bicameral Congressional CF Caucus. Currently, 143 legislators representing both parties and nearly every state have joined the caucus. They will play an important role in Congress to raise awareness of cystic fibrosis; support CF research, drug discovery and development; encourage collaboration between the public sector and private organizations; and advance access to quality, affordable CF care.