Tuesday, July 07, 2015

Pennsylvania is Champion of Change

from the inbox:

 On Wednesday, July 8th, the White House will recognize nine individuals as “Champions of Change” for Precision Medicine who are making a difference in transforming the way we improve health and treat disease.  These individuals embody the promise of the President’s Precision Medicine Initiative, which was launched earlier this year to enable a new era of medicine through research and technology that empowers patients, researchers, and providers to work together toward development of individualized treatments.  The program will feature remarks by Secretary of Health and Human Services Sylvia Mathews Burwell, Senior Advisor to the President Brian Deese and Director of National Institutes of Health Francis Collins.

The Champions of Change program was created as an opportunity for the White House to feature individuals doing extraordinary things to empower and inspire members of their communities. The event will be live streamed on the White House website. To watch this event live, visitwww.whitehouse.gov/live  on July 8th at 2:00 PM ET.  To learn more about the White House Champions of Change program, visit www.whitehouse.gov/champions/and to learn more about the Precision Medicine Initiative, visit www.whitehouse.gov/precision-medicine. Follow the conversation at #WHChamps.

There is one Pennsylvanian on the list:

Emily Kramer-Golinkoff, Bala Cynwyd, Pennsylvania
Emily Kramer-Golinkoff, a 30 year old with advanced stage cystic fibrosis and cystic fibrosis-related diabetes, is co-founder of Emily's Entourage, a 501(c)3 that raises funds and awareness to accelerate new treatments and a cure for rare (nonsense) mutations of Cystic Fibrosis (CF). She is also Manager of Strategic Initiatives and Operations at the Penn Medicine Social Media and Health Innovation Lab. Energized by recent breakthroughs for other CF mutations, Emily and her Entourage have raised over $1.5 million since the organization's founding in 2011, and led worldwide efforts to fast track research on rare nonsense CF mutations through research grants, scientific symposia, and collaboration among leading scientists in this area.  With only 35 percent lung function, Emily spends over 3 – 4 hours a day on treatments, injects multiple insulin shots, and takes countless pills to slow progression of her disease.

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