By Pat Loeb

PHILADELPHIA (CBS) — A Philadelphia-area woman is being honored at the White House Wednesday for her efforts to find a cure for a rare form of Cystic Fibrosis.

At just 30-years-old, she’s already raised $1.5 million for research.

Emily Kramer-Golinkoff, of Bala Cynwyd, founded Emily’s Entourage when she was just 26, but it has become the worldwide leader in raising funds and awareness for a particularly pernicious CF mutation.

“Because it’s so severe, it’s an area where there haven’t been breakthroughs and there’s been very little research.”

Kramer-Golinkoff knows how serious this is. She has it.

“Unfortunately my disease is fairly advanced. I have about 35 percent lung function at my very healthiest.”

It gives her efforts an urgency that funders respond to and that struck the White House as embodying “the promise of the President’s Precision Medicine Initiative, which was launched earlier this year to encourage patients, researchers and providers to work together to develop individualized treatments.” It named her one of nine Champions of Change.

“It was totally shocking and such an honor and it still blows my mind.”

You can learn more about Emily’s entourage at www.EmilysEntourage.org or at https://www.facebook.com/EmilysEntourage.

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