Meet a Health Hero: Emily Kramer-Golinkoff

Emily Kramer-Golinkoff

» You can vote for Emily here October 6th through 12th. Mark your calendar! 

Name: Emily Kramer-Golinkoff

Role: Founder of Emily’s Entourage, a nonprofit that raises money and awareness to help find a cure for Cystic Fibrosis.

Who or what motivates you to be healthy?
“Healthy” is a funny term, but my biggest motivations for working my hardest to stay as healthy as possible — even in the face of an advanced and progressing fatal illness — are my family and friends, this burning desire to do more things and see more places, and the unbelievable Entourage that rallied behind me to give me and so many others real, tangible hope for that chance.

Describe a health or fitness related turning point in your life.
In 2012, a breakthrough drug to treat the root cause of Cystic Fibrosis was approved by the FDA for 4 percent of the CF population with one particular genetic mutation. For those it helped, the drug was an absolute life-saver — allowing people to run marathons, start families, and come off the transplant list. Unfortunately I am not part of the lucky 4 percent, but this drug showed what’s possible and lit a fire in my belly to make that dream become a reality for everyone with CF.

What “policy” would you institute to make Greater Philadelphia a healthier region?
Currently, there are more than 120,000 people waiting for a lifesaving transplant in the US. Sadly, many of them will not ever get their second chance at life due to a major national organ shortage. For people with CF, lung transplant is the only treatment option for end-stage CF. It’s a treatment that I will pursue when the time comes and one that has saved the lives of countless treasured CF friends of mine. This issue is painfully personal and the incredible thing is that we can do something about it. All it takes is signing up to become an organ donor and you can save the lives of up to eight people. I would love to see a policy encouraging large Philadelphia entities (hospitals, universities, and other big employers) to provide increased education about the benefits of being a donor, including a PSA campaign. It’s the greatest gift anyone can ever give and I can’t think of a better example of “brotherly love” than that.

What’s the most important part of your health or fitness regimen?
Everyday, when I’m healthy, I do three to four hours of breathing treatments to help slow progression of my disease. While they’re not exactly fun or glamorous per se, these are the treatments that keep me alive and allow me to take on the world — and for that, I’m extremely grateful.

What is your number one piece of health-related advice?
Life is full of unexpected twists and turns. Sometimes bad things happen that test your spirit more than you could have ever imagine. At those moments, you have a choice: You can focus on bemoaning that which you cannot change, or you can decide to do something about it. Personally, I choose action. In my experience, you get much further and feel much better when you channel your energy towards things you can change.

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