White House Honors Advocate with Cystic Fibrosis

On July 8, the White House honored 30-year-old Emily Kramer-Golinkoff as a “Champion of Change” for her role in advocating for the integration of precision medicine into the U.S. healthcare system.

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Advocates at White House.
Erin Moore, CF mom and former CF Foundation Ohio State Advocacy Chair, meets with White House Champions of Change honoree Emily Kramer-Golinkoff after a panel discussion on the potential benefits of precision medicine.

 

Through the Champions of Change program, the White House honors individuals who are doing extraordinary work to empower and inspire members of their communities. The Champions of Change honored on July 8 are advocates who are working to harness the power of data to better treat diseases and improve health.

Emily was just six weeks old when she was diagnosed with cystic fibrosis in 1985. At that time the average life expectancy of a CF patient was mid-to-late 20s. Today, in her role as a CF advocate, Emily has appeared in countless interviews and articles, and has published numerous pieces on her experiences living with a life-threatening disease. Through her non-profit organization Emily’s Entourage, she has raised over $1.5 million for research into rare nonsense mutations of CF.

Earlier this year, the Obama Administration launched the Precision Medicine Initiative, which was created in order to usher in a new model of specialized health care that focuses on individualized treatment and prevention. The goal is to stop applying health care treatments as a “one-size-fits-all-approach.”

During the launch event for the Precision Medicine Initiative in late January, President Obama specifically spoke about the role of targeted healthcare in providing effective treatments for people with cystic fibrosis. Bill Elder Jr., a person with CF who takes Kalydeco and guest of the first lady at the 2015 State of the Union Address, was singled out by the President as “living proof” of the power of precision medicine. During the Champions of Change panel session, Emily referred to precision medicine as the hope for her future.

"I am so honored to have been chosen as a Champion of Change for precision medicine,” Emily said. “Precision medicine has led to incredible advances in this arena for people with cystic fibrosis, including the approval of Orkambi just last week. I am deeply committed to extending these benefits to everyone with CF, including those with nonsense mutations like mine. This initiative gives me so much hope!"

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