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Video

Emily Kramer-Golinkoff on The Doctors

Emily shares her story — and picks up a $10,000 check — on CBS’s Dr. Phil spinoff The Doctors.  You can also watch her TEDx talk, and her talk at Stanford’s Medicine X Conference on participatory medicine

Cheat Sheet

Quick facts about cystic fibrosis

  • There are 30,000 cystic fibrosis patients in the U.S.
  • The life expectancy for an individual with cystic fibrosis is 41 years.
  • Approximately 1,000 people are diagnosed with cystic fibrosis each year.
  • Nearly half of the current cystic fibrosis population is 18 years or older.
  • Over 1,800 mutations of the cystic fibrosis gene have been identified.
  • Only about 1% of CF population has one copy of Emily’s rare nonsense mutation; she has two copies. There are no published statistics on how many others have 2 copies of her rare nonsense mutation, but the estimate is only about 500 worldwide.

Read More

About cystic fibrosis, Kramer-Golinkoff's condition and patient empowerment

Kramer-Golinkoff on the President’s Precision Medicine Initiative’s blog.

The Journal of General Internal Medicine’s on Emily’s Entourage and participatory research.

Media coverage of Emily’s Entourage, including the Philadelphia Inquirer and the Penn Gazette.

Seattle Mama Doc’s blog post on patient empowerment.

Emily’s Entourage founder is racing against time to cure her own rare disease

Back in December of 2011, Emily Kramer-Golinkoff co-founded Emily’s Entourage, a charitable foundation dedicated to finding a cure for the particular strain of cystic fibrosis (CF) from which Kramer-Golinkoff suffers. Initially, the non-profit’s goal was to raise $50,000 to further research her “nonsense” mutation of CF.

When we last spoke with Kramer-Golinkoff in September of 2015, she and her team had raised $1.5 million, held two national symposiums, and even appeared at the White House, where Kramer-Golinkoff was named one of nine “Champions for Change.” Despite shattering initial expectations and funding goals, Kramer-Golinkoff and her team had no intentions of stopping.

Since September, Emily’s Entourage has continued to ride a wave of momentum. Along with drastically increasing the amount of funding and research available to the CF community, the group has also gained some much deserved attention and notoriety.

She was featured on CBS Philly, NBC10 and Main Line Today, on the websites of Time and People magazines, and appeared on TV’s syndicated The Doctors where she shared her story with a national audience. At the end of the show, the hosts surprised her with a $10,000 check to fund more research.

“The past few months have been a whirlwind,” Kramer-Golinkoff says. At their annual gala on December 5th, Emily’s Entourage kicked off a fundraising campaign that spanned until Kramer-Golinkoff’s birthday on January 9th. In that time, they were able to raise nearly $400,000, and with such monumental fundraising achievements came significant amounts of media exposure.

In addition to being featured on local news outlets such as CBS Philly, NBC10 and Main Line Today, Kramer-Golinkoff’s story has also gained national attention. She was featured on the websites of Time and People magazines, and appeared on TV’s syndicated The Doctors where she shared her story with a national audience. At the end of the show, the hosts surprised her with a $10,000 check to fund more research.

“I’m overcome with extreme gratitude,” Kramer-Golinkoff says when asked about all the attention. “It has shown me that people have really big hearts and they’re really eager to help.”

Still, Kramer-Golinkoff’s condition worsens every day, adding dire urgency to her race against time. “I’m never far from the reality of why we’re doing this,” she says. “My condition is deteriorating, so we’re constantly hustling and can’t afford to take breathers.”

There have been strides made in many sectors of CF research, but no cure for her mutation has been found yet.

“It’s very bittersweet,” she says. “I never feel frustrated or discouraged, but sometimes I do feel a little envious. I think it’s really sort of a motivator.”

Still, Kramer-Golinkoff’s condition worsens every day, adding dire urgency to her race against time. “I’m never far from the reality of why we’re doing this,” she says. “My condition is deteriorating, so we’re constantly hustling and can’t afford to take breathers.”

Emily’s Entourage has a number of upcoming events designed to both grow the CF support community and raise more money for research and a potential breakthrough. The organization will be hosting yoga and spin classes throughout the winter and spring that are open to the public.

Along with organizing fundraising efforts and events, Kramer-Golinkoff and her team are in constant contact with scientists and researchers who are using every dime raised by Emily’s Entourage to help find a cure. “Our goal is to work very fast and find a breakthrough,” she explains.

Given recent breakthroughs in CF research, those still searching for a cure for their particular mutations have new senses of hope and optimism. And despite having a particularly rare mutation of CF, Kramer-Golinkoff never feels alone or isolated from the CF community—even though those with CF are unable to be in the same room together because it could lead to health complications. “The community is strictly virtual,” she says.

Maya Angelou once said, “If you don’t like something, change it. If you can’t change it, change your attitude.”

Kramer-Golinkoff is all about the transformative nature of attitude. What started with a dream to raise $50,000 has turned into a brigade that continues to push forward with a laser focus and a collective refusal to slow down. Even when Emily’s Entourage reaches its goal of finding a cure, Kramer-Golinkoff says she won’t stop. Instead, she and her mom will work together to cure another disease and save more lives.

First, though, there’s one thing Kramer-Golinkoff plans on doing: “My family always had a plan that when there was a cure we were going to take all our friends and family and go on a hot air balloon ride,” she says. “That’s how we’ll celebrate.”

Fitting for someone with such sky-high ambition.

The Philadelphia Citizen will only publish thoughtful, civil posts. We want to be a communal space. But that doesn’t mean you have a First Amendment right to be an idiot. Send us an insulting, offensive and/or wildly off-topic comment and not only will we refrain from posting it -- we will laugh at you before we hit delete.

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