Volunteers from 38 States Meet with Elected Officials to Advocate for People with CF

Advocating on behalf of friends and family members with cystic fibrosis, more than 120 CF Foundation volunteers came together in the nation's capital to speak with their elected officials on behalf of friends and family members affected by the disease.

| 3 min read
Advocates pose with Rep. McGovern during 2015's March on the Hill.
CF Foundation volunteers Ellen Schwanke and Terry Waite pose for a photo with Rep. Jim McGovern (D-MA) after meeting with him to discuss the needs of people with CF and their families during the Cystic Fibrosis Foundation’s 2015 March on the Hill event.

 

As part of the CF Foundation's annual March on the Hill, volunteers from 38 states attended more than 270 meetings with members of Congress to tell their elected officials what they could do to help the cystic fibrosis community find a cure and improve the lives of people with the disease.

“Advocacy plays a vital role in the Foundation's mission to find a cure for cystic fibrosis,” said Robert J. Beall, Ph.D., president and CEO of the Foundation, on the morning of the event. “By building relationships with elected officials, we create champions in Congress for the CF community that can help move us one step closer to making important policy changes a reality.”

In addition to sharing their personal CF stories and highlighting the needs of people with CF, volunteers asked their congressional representatives to co-sponsor the Ensuring Access to Clinical Trials Act. If passed, the act will make permanent a law that allows individuals with rare diseases to receive compensation for participating in clinical trials without fear of losing vital health benefits through Social Security and Medicaid.

Volunteers also pushed for greater funding for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), which is crucial to the development of new, specialized treatments and therapies for people with cystic fibrosis.

National Advocacy Co-Chairs meet with a member of Congress.
National advocacy co-chairs Melissa Shiffman and Rebecca Schroeder, along with Brock Schroeder, meet with staff from Sen. Mike Crapo’s (R-ID) office to discuss ways Crapo and his colleagues can help CF families.

 

Representative Tom Marino (R-PA), co-chair of the Congressional Cystic Fibrosis Caucus, thanked volunteers for their efforts at the opening reception, emphasizing the importance of sharing powerful, personal stories about CF with elected officials.

Senator Edward Markey (D-MA) and Representative John Fleming (R-LA) also shared inspirational words with the group of advocates, discussing the importance of their efforts in educating the congressional community about cystic fibrosis and inspiring elected officials to help make a difference.

“I am so grateful to be able to come to Washington, D.C. and advocate for my granddaughter and all people living with CF,” said volunteer Reva Ayala of Texas. “It's empowering to know that by meeting with members of Congress, I and other advocates are able to help make a lasting impact on CF families across the country.”

Learn more about how you can be involved in advocacy, or contact us at publicpolicy@cff.org.

Learn more about how to set up a meeting with your elected officials to talk about how they can support the CF community.

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About the CF Foundation | Public Policy | Advocacy
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