October 2011

Getting in Some Face Time

Getting in 
Some Face Time - October 2011 - Connections - CF 
Senator Jon Kyl (R-Ariz.) with Ari Roth, 17, who has CF.

When congressional representatives returned to their hometowns during summer recess, advocates for cystic fibrosis took advantage of the opportunity to meet face- to-face with their elected officials as part of Make Every Breath Count, the Cystic Fibrosis Foundation’s annual advocacy campaign.

Advocacy: It’s Personal

This year’s Make Every Breath Count kicked off in July, and a record number of people with CF, friends, family members and other advocates signed up to meet with their elected officials. Advocates who take part in Make Every Breath Count help build support for CF research and care among policymakers – without traveling to the nation’s capital.

Sharing personal stories of how CF affects them, advocates also bring to light the daily challenges of life with CF for congressional leaders in a way that statistics can’t. “By meeting face-to-face with Members of Congress, senators and their staff, advocates can help them understand the disease and why it is imperative they support research,” Rep. Edward Markey (D-Mass.), co-chair of the Congressional CF Caucus explains.  

Speaking Out

Getting in 
Some Face Time - October 2011 - Connections - CF 
Ella Deveaux, 7, who has CF, meets with Sen. Wyden (D-Ore.) as part of Make Every Breath Count, the CF Foundation’s annual advocacy campaign.
Summer is an important time for senators and representatives to visit with constituents and hear about the issues that are important to them. The Make Every Breath Count campaign provides an opportunity for CF advocates to educate elected officials about issues important to CF, such as the urgent need to preserve crucial funding for the Food and Drug Administration and the National Institutes of Health.

Advocates across the country hope to hold a total of 75 meetings by the end of this year. 

“Meeting with Senator Gillibrand's office was a very positive experience,” says State Advocacy Chair for the Greater New York Chapter Melissa Shiffman, who has CF. “Her health care caseworker was extremely proactive on matters related to patients' rights and health insurance, and I was touched when her intern, who had been quiet most of the meeting, shared that he had researched CF for a school paper and later learned his friend had the disease. I could tell that we had found a compassionate and caring alliance in Senator Gillibrand's staff.”

Although elected officials have headed back to Washington, advocates can still meet with elected officials to encourage support for policies that advance CF research, improve access to CF care and increase awareness of the disease.

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