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

April 9, 2014

March on the Hill 2014

Volunteers from 27 states held more than 175 meetings with members of Congress during March on the Hill, the Cystic Fibrosis Foundation’s signature annual advocacy event.

More than 60 CF Foundation volunteers 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.”

Cystic Fibrosis Foundation President and CEO Robert J. Beall, Ph.D., kicked off the event by thanking volunteer advocates for their time and commending them for the important roles they play in the lives of CF families everywhere.

“By being here today, you are making sure the voice of the CF community is heard in Congress,” Beall said. “Your work advocating on behalf of the CF community has helped make possible the tremendous advancements that are allowing all people with this disease to live longer, healthier lives.”

Congressional Cystic Fibrosis Caucus co-chairs Representatives Tom Marino (R-PA) and James McGovern (D-MA) also thanked the volunteers for their efforts and discussed the importance of advocacy in gaining support for policies that help people with cystic fibrosis.

“As the father of an amazing young woman who is living and thriving with CF, it is a special day when I am able to spend time with other CF families who come to Washington to advocate for the measures necessary to fight the disease,” said Marino. “Like these families, Rep. McGovern and I, along with all the members of the CF Caucus, will continue our fight to make sure the NIH and the FDA have the resources necessary to combat CF and other rare diseases so that others like my daughter can continue to live and succeed in spite of the challenges they face.”

"I am honored to be a part of the Cystic Fibrosis Foundation's search for a cure and to meet so many people from all across the country who are committed to supporting the mission of the Foundation,” McGovern said. “I am inspired by this community’s passion, dedication and personal stories. I am more determined than ever to make sure that doctors and researchers have the tools they need to treat and end this disease once and for all."

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.