| | Oregon Family Kicks Off Make Every Breath Count Campaign
July 19, 2010
Ella Deveaux, 6, who has CF, and parents Lindsay and Jon met with Oregon Sen. Ron Wyden (left) about improving access to clinical trials for CF patients. Lindsay chairs the Foundation’s Oregon Chapter advisory board, and Jon is the CF Foundation’s advocacy chair for the state.
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This summer, six-year-old Oregonian Ella Deveaux, who has CF, made her voice heard in Congress—and she didn’t have to travel to Washington, D.C., to do it.
Ella and her parents, Jon and Lindsay Deveaux, kicked off the CF Foundation’s 2010 Make Every Breath Count advocacy campaign by meeting with Oregon Sen. Ron Wyden in their home state.
Make Every Breath Count
The Make Every Breath Count program is designed to connect CF Foundation volunteers with their members of Congress who have returned home in the summer and fall.
“It was a wonderful experience for Ella to meet with Senator Wyden,” Jon says. “Our family is so grateful for his efforts to ensure new therapies for CF and to help treatments move swiftly from the research stage into the hands of patients like Ella who need them.”
Wyden is the sponsor of the “Improving Access to Clinical Trials Act,” which would prevent people with CF from having to choose between taking part in important clinical trials and keeping their health care coverage.
CF Foundation President and CEO Robert J. Beall notes, “Senator Wyden is the champion of thousands of Americans, just like the Deveauxs, who will reap the many benefits of the new CF drugs that are leaving the clinical trials stage.”
Get Involved
The Deveaux family learned that you don’t need to be in Washington, D.C., to make a difference! You can help bolster support for the “Improving Access to Clinical Trials Act” by meeting with the members of Congress in your community.
Learn more about the 2010 Make Every Breath Count campaign. |
