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 Watch Charlotte, whose son Trey has CF, talk about her dream for the future. 
 Watch Charlotte, whose son
 Trey has cystic fibrosis, talk
 about her dream for the future.
 

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Michigan Teens Give U.S. Senator a Glimpse of Life with CF

August 20, 2010

Emily and Molly Bonnell welcomed Michigan Sen. Debbie Stabenow into their home to show her what their day-to-day lives are like as teens with CF.
Emily and Molly Bonnell welcomed Michigan Sen. Debbie Stabenow into their home to show her what their day-to-day lives are like as teens with CF.
This month, 15-year-old Molly Bonnell and her sister Emily, 13, who have cystic fibrosis, discovered how easy it is to make their voices heard in Congress — without leaving their living room.

Wanting to know more about the impact CF has on families like the Bonnells, Michigan Sen. Debbie Stabenow visited their home to meet the sisters and better understand the challenges they face.

On the day of the visit, Molly, Emily and other local CF advocates expressed their gratitude for Sen. Stabenow’s role in helping to pass the “Improving Access to Clinical Trials Act” in the Senate.

This important piece of legislation is designed to prevent people with CF from having to choose between taking part in important clinical trials and keeping their health care coverage.

“Meeting with Sen. Stabenow was an amazing experience for the girls,” said their mother, Laura Bonnell, state advocacy chair for the CF Foundation. “She said that the most important thing we can do to make an impact in Washington, D.C., is to write letters and make them personal.”

Earlier this month Emily and Molly also met with Rep. Gary Peters in Michigan. Armed with letters from other CF parents and patients, Emily and Molly explained to their representative what their day-to-day lives are like with CF.

Their story inspired Rep. Peters to co-sponsor the “Improving Access to Clinical Trials Act” and to join the Congressional Cystic Fibrosis Caucus.

Get Involved

Just as the Deveaux family from Oregon learned last month, Emily and Molly discovered that you don’t need to be in Washington, D.C., to make a difference! Now that the “Improving Access to Clinical Trials Act” has passed the Senate, you can help ensure that it passes in the House of Representatives by meeting with your member of Congress in your community.

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