Senators Markey and Grassley Pass Bipartisan Resolution Designating May 2016 Cystic Fibrosis Awareness Month

Washington (May 26, 2016)- Senators Edward J Markey (D-Mass.) and Chuck Grassley (R-Iowa) today applauded the passage of a bipartisan resolution to designate May 2016 as Cystic Fibrosis Awareness Month. The resolution strives to bring attention to this tragic disease, acknowledges the tremendous investments and scientific achievements made to improve lives of those with Cystic Fibrosis (CF), and celebrates the community of individuals with CF and who care for those with CF. Last month, Senators Markey and Grassley founded the Cystic Fibrosis Caucus in the U.S. Senate and will hold its inaugural event on Thursday, June 23, when both senators will host a discussion with teen advocates.

“I am proud to work with my colleague across the aisle, Senator Grassley, to strive towards making the CF of Cystic Fibrosis stand for Cured Forever,”said Senator Markey, who co-founded the Congressional Cystic Fibrosis Caucus in the House of Representatives in 2006. “With increased awareness of this rare disease, and with additional resources, we can help those who battle daily with the realities of living with cystic fibrosis. Breakthrough therapies and innovative care delivery systems can serve as both a model and an inspiration for other rare diseases that afflict countless Americans. The CF community continues to work tirelessly for their cause and we will continue to partner with them as we move forward.”

“It’s inspiring to work with families who advocate for people with cystic fibrosis,” said Senator Grassley, who spoke at a “Great Strides” walk for cystic fibrosis in West Des Moines last Saturday. “The parents who want the best for their children raise awareness about living with cystic fibrosis and work on research toward treatment and a cure.  Picking up the thread in the Senate with the caucus is meant to advance the cause these families have embraced.”

A copy of the resolution, S.Res. 476, can be found HERE

 

Cystic Fibrosis is a rare disease in which genetic mutations produce a defective protein that fails to properly clear mucus from the lungs and other organs. The clogging that results can cause fatal lung infections and impairs vital organ function in the patient. There are about 1,800 known mutations to the CF gene that play a role in the disease.  New therapies and screening standards have dramatically increased quality of life and average age of survival, making CF a high standard for rare disease care delivery and treatment.

 

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