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Health: Local Woman To Be Honored At White House For Her Efforts To Raise Awareness About Cystic Fibrosis

By Stephanie Stahl

PHILADELPHIA (CBS) -- A Montgomery County woman will be honored at the White House Wednesday for her efforts to fight a devastating disease.  The President will recognize nine people as Champions of Change for being on the front lines of finding new kinds of treatments.

Emily Kramer Golinkoff first learned the White House wanted to honor her for her work to find better treatments for Cystic Fibrosis, CF.

She says, "We've been focused on accelerating research."

Emily, who's 30-years-old and takes a variety of medications, has a rare and advanced stage of the progressive lung disease. "The funning thing about CF it's deceptive, I look really healthy on the outside, that masks the fact that I have advanced stage disease and only 35 percent lung function," Emily explains.

From her home in Bala Cynwyd, she started Emily's Entourage to raise money and awareness about cystic fibrosis. The effort has contributed more than $1.5 million for research on the rare mutation that's threatening her life.  Emily says, "We're really trying to buy time so there is a breakthrough I can benefit from and we're running out of time."

Her fight against Cystic Fibrosis will be recognized by the President's Precision Medicine Initiative that's encouraging research on targeted treatments and honoring people like Emily who will be among nine awarded as Champions of Change.

"My hope is Emily's Entourage and the precision medicine initiative will lead to a breakthrough that gives me a future," Emily says.

Links:

www.EmilysEntourage.org

https://www.facebook.com/EmilysEntourage 

https://twitter.com/EmsEntourage4CF 

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