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Volunteers “March on the Hill” During the CF Foundation’s Annual Advocacy Effort

March 23, 2011

On March 17, more than 60 Cystic Fibrosis Foundation volunteers from across the nation came together on Capitol Hill as part of the Foundation’s March on the Hill annual advocacy effort. Participants representing 25 states attended more than 140

Margarete and Marc Cassalina and Melissa Shiffman get ready to start an exciting day on meeting with members of Congress during the CF Foundation’s March on the Hill annual advocacy effort this March.     
Margarete and Marc Cassalina and Melissa Shiffman get ready to start an exciting day meeting with members of Congress during the CF Foundation’s March on the Hill annual advocacy effort this March.
meetings with their members of Congress, shared their personal CF stories and asked their representatives to support legislation that strengthens the search for new treatments and a cure for CF.

During the event, Oregon Sen. Ron Wyden, Massachusetts Rep. Edward Markey and Florida Rep. Cliff Stearns were honored for outstanding leadership on behalf of people with cystic fibrosis. That evening, volunteers attended a celebratory dinner at which Foundation staff and special guests — including Rep. Markey and Sen. Wyden — thanked them for their efforts. “By meeting face-to-face with your Members of Congress, Senators and their staff, you have helped them understand the disease and why it is imperative they support research,” Rep. Markey said.

Giving a Voice to the CF Community

In 2010, President Obama signed into law the "Improving Access to Clinical Trials Act" (I-ACT), which was introduced by Sen. Wyden in the Senate and Reps. Markey and Stearns in the House. This legislation enables patients with rare diseases to participate in clinical trials without losing eligibility for public health care benefits.

In 2006, Reps. Markey and Stearns founded the Congressional Cystic Fibrosis Caucus to increase awareness about issues of importance to people with CF. These issues include the need for increased federal support of research funding, improved access to specialized care and a reduction in the high cost of medicine for CF patients. 

“Senator Wyden, Representative Markey and Representative Stearns are champions for people with cystic fibrosis," said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. "They have worked tirelessly to raise awareness of CF, strengthen research efforts and accelerate the search for a cure. We are grateful for their support.”

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Click play to view photos of the 2011 March on the Hill

       

 

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