There are numerous organizations and foundations focused on fighting cystic fibrosis (CF), but Emily’s Entourage stands out for the rapid rise from a local group to being recognized by the White House in just a few years. The stories of the organization Emily’s Entourage and of Emily Kramer-Golinkoff go hand in hand, and telling one does not make sense without telling the other. While Emily is a 31-year-old woman and Emily’s Entourage is still a five-year-old youngster, the path for the creation of the 501(c)3 organization started few weeks after Emily’s birth in 1985.
The young couple Michael Golinkoff and Liza Kramer saw their first child born on January 9th of that year and nothing pointed towards the baby being ill. However, when Emily was just six weeks old something changed. “My mom heard me cough ONCE and had a mother’s intuition that something was off. We were on a trip at the time and she rushed me home to the doctor. I was hospitalized with pneumonia and failure to thrive,” told Emily Kramer-Golinkoff in an interview to Cystic Fibrosis News Today.
From One Cough to Cystic Fibrosis
After numerous tests, it was Liza who stumbled upon the diagnosis, and her mother’s intuition was once more correct. She was reading a book at the time about cystic fibrosis and had a gut feeling that it could be her daughter’s disease. Liza was the one to ask for a sweat test for Emily and the results confirmed the diagnosis. Despite already being informed about what cystic fibrosis is, Emily describes her parents’ reaction as shock, horror and fear. “I was their first child, there was no family history of cystic fibrosis, and they were so young and naive. It had never occurred to them that babies can be born sick.”
Cystic fibrosis is a genetic and life-threatening disease that affects one in 25 of all newborns, although 50% of people born with the CF gene don’t go on to suffer from the disease. Patients with cystic fibrosis usually experience symptoms like very salty-tasting skin, persistent coughing with phlegm, frequent and persistent lung infections, wheezing or shortness of breath, poor growth or weight gain, and frequent greasy, bulky stools, or difficulty with bowel movements. Despite the fact that the family’s life radically changed at the moment of diagnosis, Emily describes her childhood as “shockingly normal.”
“CF was very matter of fact. I did chest PT [physical therapy] and took my pills and meds and treated them just like all the other chores. They were no different than brushing my teeth or hair. In fact, chest PT was a special bonding time with my parents that I actually enjoyed,” said Emily. “We became masters at creatively integrating CF into my otherwise normal, rich and productive life. Some highlights include our chest PT trains, where all of my friends would line up in front of me and we’d all perform chest PT on each other. Everyone looked forward to those special opportunities!”
Changing the Lives of Others
While dealing with cystic fibrosis, Emily was regularly on IV antibiotics but still managed to graduate from high school and start attending the University of Pennsylvania. “I’d whip out my meds and needles and syringes in the middle of classrooms, and nobody would bat an eye,” she recalls. However, life was not always as smooth going as Emily’s health started to deteriorate. “My parents and I went to great lengths to fit my medical care in around my life — without sacrificing my qualify of care. I feel very fortunate that I had the luxury of growing up without my life being totally dictated by CF. As I’ve gotten older and my disease has progressed, that has become increasingly challenging.”
When Emily’s cystic fibrosis became more demanding and difficult to deal with, Michael Golinkoff and Liza Kramer realized they had to seek options and do something, not only for their daughter but also for others. “Emily’s Entourage started in 2011 on my parents’ living room floor. I was getting sicker and sicker and we realized we didn’t have to sit back passively, resigned to the fate of this cruel disease. We decided to take matters into our own hands,” said Emily about the moment Emily’s Entourage was born with the help of family and friends.
The organization has only been active for the last five years but it has already gained great strides in the fight against cystic fibrosis. Focused on fast-tracking research for new treatments and a cure for rare nonsense mutations of CF, Emily’s Entourage has raised nearly $2 million to drive high-impact research, groundbreaking collaboration, and raise awareness around the world. It has hosted two scientific symposia and has been named one of nine Champions of Change for Precision Medicine by the White House. This last achievement has greatly increased visibility for Emily’s Entourage since the White House uses this title to honor the work of patients, researchers, innovators, and advocates who are advancing understanding in health and determined diseases.
The Future of the Emilies
During this time, Emily Kramer-Golinkoff helped found the organization and managed to get a master’s degree in bioethics and certification in clinical ethics mediation. She is now a project manager at the Penn Medicine Social Media and Health Innovation Lab and a patient advocate and speaker, all while she undergoes three to four hours of daily treatments, which include bronchodilators, hypertonic saline, inhaled antibiotics, the therapy vest, along with about 30 pills and 4 insulin injections for CF-related diabetes. “It takes more creativity and effort at this point in my life, but I am incredibly grateful that I’m still able to do the things and be with the people that I love most.”
Like their stories, the futures of one Emily and the other are closely bonded. “Emily’s Entourage is my life’s work – because my life actually depends on it. I have big eyes, a bright future and this fatal disease that is robbing me of my breath and life. There are so many things I want to do in the world and the only thing holding me back is this awful disease. That fervor, that insatiable hunger for life is what propels my fight for new treatments and a cure,” said Emily about the future. “We’re going to keep doing everything in our power to bring people together, innovate, and operate quickly so that we can pump out breakthroughs in time to save my life and the lives of so many others who so desperately deserve the chance of a future too.”
The organization Emily’s Entourage has pledged not to stop until every patient who suffers from cystic fibrosis is able to breathe freely. Emily will continue to work with her family and friends, as well as the many people who supported the cause and joined the organization since its foundation while she aims to fulfill her dreams, which are expressed in her bucket list:
- To go to a mind/body/spirit spa
- To travel to Switzerland, Greece, Italy, and Australia
- To attend a tennis grand slam tournament, preferably in Europe
- To hike to the top of a mountain and spin in circles at the top with my arms out wide
- To visit Charleston, South Carolina
- To go on a cross country road trip
- To get my email inbox down to one page
- To have my whole family live in the same city
- To learn how to take great photographs
- To write a blog and update it regularly
- To give a speech “off the cuff” and totally nail it
- To take a digital graphic design class
- To travel to Portland, Oregon, and Seattle, Washington
- To see a kangaroo in natural habitat
- To take a trip just with my siblings
- To write a New York Times op-ed and actually get it published
- To go back to Paris and stay for some time.
Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.