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posted: 7/30/2013 1:12 PM

Barrington teens urge Congress to support cystic fibrosis drug research

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  • Senator Dick Durbin meets with Madeline Goetz of Ottawa and Hayley and Natalie Gray of Barrington, at the U.S. Capitol during the Cystic Fibrosis Foundation's Teen Advocacy Day, June 27.

      Senator Dick Durbin meets with Madeline Goetz of Ottawa and Hayley and Natalie Gray of Barrington, at the U.S. Capitol during the Cystic Fibrosis Foundation's Teen Advocacy Day, June 27.
    Courtesy of Cystic Fibrosis Foundation

 
Submitted by Cystic Fibrosis Foundation, Greater IL Chapter

On June 27, Barrington High School students Hayley and Natalie Gray joined nearly 60 other teens from across the United States to press elected officials in Washington, D.C., to support cystic fibrosis drug research and development and to protect access to high-quality, specialized care for people with the disease on behalf of the Cystic Fibrosis Foundation.

Natalie and Hayley participated in Teen Advocacy Day in memory of their sister, Lauren Gray Munao, who had CF, a genetic disease that causes recurrent lung infections, lung damage and premature death. Lauren, a 2002 graduate of Barrington High School, died in 2009, at age 26 from complications of CF.

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During the event, Natalie and Hayley met with Senator Dick Durbin and with staffers from the offices of six other Illinois lawmakers, including Senator Mark Kirk and Representatives Tammy Duckworth, Peter Roskam, Bobby Rush, Bill Enyart and Daniel Lipinksi, to share their personal experiences and to advocate for people with CF.

"I am honored to have been a part of Teen Advocacy Day and to have had the opportunity to travel to Washington, D.C., in Lauren's memory and to fight for other people with this terrible disease," said Natalie. "It was exciting to meet our elected officials and help them understand CF. I know firsthand why we need new medicines to treat cystic fibrosis and the importance of quality CF care, and I want people in Washington to understand, too."

The Gray sisters have been active supporters of the Cystic Fibrosis Foundation for years, volunteering and participating at the Barrington Great Strides Walk and 5K, the Cycle for Life and the Grand Chefs Gala, but Teen Advocacy Day took their support for the cause to a whole new level.

"Teen Advocacy Day gave us both a deeper understanding of what happens with the money we raise at events like Great Strides and how important it is to keep developing new drug therapies that will save the lives of people like our sister Lauren," explained Hayley.

The teens asked their members of Congress to increase funding for the National Institutes of Health and the Food and Drug Administration and to recognize the importance of affordable access to care at CF Foundation-accredited care centers.

Teen Advocacy Day is sponsored by the Cystic Fibrosis Foundation. For information and to get involved, call (800) 344-4823 or visit www.cff.org.

The Cystic Fibrosis Foundation is a world leader in the search for a cure for cystic fibrosis. The foundation funds more CF research than any other organization and nearly every CF drug available today was made possible because of foundation support. Based in Bethesda, Md., the foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. The CF Foundation is a donor-supported nonprofit organization.

Locally contact: Cheryl Sundheim, (312) 236-4491, ext. 109; the Cystic Fibrosis Foundation, 150 N. Michigan Ave, Suite 1550, Chicago, IL 60601; email csundheim@cff.org or visit www.cff.org/chapters/grillinois.

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