Advocacy & Public Policy

Volunteer Advocates “March on the Hill” to Educate, Gain Support from Members of Congress

April 9, 2014

Greater NY Chapter State Advocacy Chair, Melissa Shiffman, Congresswoman Nydia Velazquez, 7th District, and Trina Ward Fontaine, Greater NY Chapter staff member, during March on the Hill, the Cystic Fibrosis Foundation’s signature annual advocacy event.

More than 60 CF Foundation volunteers, including Marc and Margarete Cassalina, Melissa Shiffman and Trina Fontaine from the Greater New York Chapter, came together in Washington, D.C. to speak with their elected officials on behalf of friends and family members affected by the disease during March on the Hill, the Cystic Fibrosis Foundation’s signature annual advocacy event.

Volunteers from 27 states held more than 175 meetings with members of Congress where they shared personal stories, highlighted the needs of people with CF and asked their representatives and senators to support greater funding for the National Institutes of Health and the Food and Drug Administration (FDA). Both organizations play critical roles in supporting the search for new treatments and a cure for CF.

“March on the Hill offers the CF community a chance to share our triumphs, our struggles and our vision for the future with some of the most powerful people in Washington,” said Peter Barry, the Foundation’s national advocacy chair. “Speaking out on behalf of friends and families affected by this disease  lets our elected officials know just how far we’ve come in our mission to end this disease — and more important — that we will not rest until we have a cure for all people with CF.”

This marked State Advocacy Chair, Melissa Shiffman’s fourth year visiting the Hill.  “We have succeeded in building relationships with our Representatives’ offices in such a meaningful way that they now know what Cystic Fibrosis is and remember our stories and the effect CF has on our families. I feel so fortunate that our Representatives in New York understand how their policy choices affect our community and, therefore, give us a voice in Congress.” Anyone who wants to can let their Representatives and Senators know how they feel on issues of importance to the cystic fibrosis community by signing up to receive public policy alerts at http://www.cff.org/GetInvolved/Advocate/