A CF “Champion of Change” Goes to the White House

I was thrilled to learn earlier this month that Emily Kramer-Golinkoff, a young woman living with cystic fibrosis, would be honored by the White House as a “Champion of Change” for her work to advance the field of personalized medicine.  

| 3 min read
Headshot 2_square
Stephanie Krenrich
Emily Speaking_Champions of change

Emily has worked with the Foundation as a volunteer on a number of different initiatives and is such an inspiration within the cystic fibrosis community. 

An important honor, Champions of Change are ordinary Americans doing extraordinary things in their communities. Along with eight other honorees, Emily participated in a day of panels, meetings and speeches all focused on the idea that the delivery of medicine can be targeted to a specific person's genetics, lifestyle and environment. 

Emily Speaking_Champions of change
Emily speaking on a panel about the promise of precision medicine.

We were invited to attend this exciting event at the historic Eisenhower Executive Office Building.

The main event began with opening remarks by Senior Advisor to the President, Brian Deese. We were also fortunate to hear remarks by Dr. Francis Collins, director of the National Institutes of Health (and member of the team that discovered the cystic fibrosis gene in 1989), among others. 

In a panel on precision medicine, Emily beautifully articulated the realities of living with cystic fibrosis. As someone with two copies of a rare nonsense mutation, she talked about working to advance research into this rare form of cystic fibrosis and the power that patients can wield in the search for treatments and cures.

The event is part of President Obama's Precision Medicine Initiative (PMI). Precision medicine is an emerging approach to disease treatment and prevention that takes into account each person's genetic makeup and other factors. 

New targeted therapies like Kalydeco and Orkambi that treat CF patients with specific mutations in the CFTR gene are wonderful examples of precision medicine. 

Indeed, when the President announced the initiative at the 2015 State of the Union, he noted that, “In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable.”  The White House has further highlighted how taking the precision medicine drug Kalydeco has markedly improved the health of CF patient Bill Elder, Jr. Bill had the honor of sitting with first lady Michelle Obama at the State of the Union address.

This is a time of great hope and optimism in the cystic fibrosis community, as we discover new ways to treat this disease and embark on the path toward a cure. Emily's story represents the innovative thinking that is going to get us where we need to go.

Check out Emily's post, “Emily's Entourage: Giving Hope to Orphans of Orphan Disease,” on the White House's blog.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

Share this article
Headshot 2_square

Stephanie leads the Foundation's federal policy agenda. Working with Congress, federal agencies and executive branch officials, she develops and executes strategies to promote innovative research, speed the development and review of safe and effective cystic fibrosis therapies, and ensure that those with CF have access to specialized care and treatment. Prior to joining the Cystic Fibrosis Foundation, Stephanie worked on Capitol Hill for several members of Congress. She began her career as an AmeriCorps volunteer at the Montana Legal Services Association in Helena, Mont. Stephanie received her B.A. in politics from New York University and her M.A. in government from Johns Hopkins University.

Recent Community Posts
Talking About CF Used To Overwhelm Me. I Took 3 Small Steps To Find My Voice.
Blog | 5 min read
How Antibiotics Took My Hearing
Blog | 7 min read
CF Can’t Stop Me From Running
Blog | 7 min read