Emily's Entourage
Podcast #70 — Aired October 19, 2015

When a group of passionate people come together, great things can happen! That’s the story of Emily’s Entourage, a nonprofit that raises funds and awareness to help find treatments and, ultimately, a cure for rare mutations of Cystic Fibrosis. Our guest this week on BetterWorldians Radio is Emily Kramer-Golinkoff, co-founder of Emily’s Entourage. Emily will discuss her life with Cystic Fibrosis and how she hopes to fast track research to save lives.

 

 

Donate $5 to Support our Podcast!

 

 Prev Episode Next Episode

Sign Up for New Shows & Updates!

Emily Kramer-Golinkoff
Co-founder, Emily's Entourage

Emily Kramer-Golinkoff, a 30 year old with advanced stage cystic fibrosis and cystic fibrosis-related diabetes, is Co-Founder of Emily's Entourage, a 501(c)3 that raises funds and awareness to accelerate new treatments and a cure for rare (nonsense) mutations of Cystic Fibrosis. She is Manager of Strategic Initiatives and Operations at the Penn Medicine Social Media and Health Innovation Lab and a nationally recognized patient advocate and speaker. Energized by recent breakthroughs for other CF mutations, Emily and her Entourage have raised over $1.5 million since 2011 and led worldwide efforts to fast track research on rare nonsense CF mutations through research grants, scientific symposia, and collaboration among leading scientists in this area. With only 35% lung function, Emily spends over 3-4 hours a day on treatments, injects multiple insulin shots, and takes countless pills to slow progression of her disease.

 

Episode Transcript

Raymond Hansell
Hi and welcome to BetterWorldians Radio. BetterWorldians Radio is a weekly broadcast whose mission is to uplift and inspire you to make the world a better place. Im Ray Hansell joined today by my co-host and life partner MarySue Hansell. This week on BetterWorldians Radio were talking about Emilys Entourage, a nonprofit that raises money and awareness to help find a cure for cystic fibrosis, with a focus on rare mutations. MarySue will be talking with Emilys Entourage Co-founder Emily Kramer-Golinkoff, a thirty year old with advanced stage cystic fibrosis and cystic fibrosis-related diabetes. Emily is Manager of Strategic Initiatives and Operations at the Penn School, at the Penn Social Media and Health Innovation Lab and a nationally recognized patient advocate and speaker. Energized by recent breakthroughs for other CF mutations, Emily and her Entourage have raised over one point five million dollars since 2011 and led worldwide efforts to fast track research on rare nonsense CF mutations through research grants, scientific symposia, and collaboration among leading scientists in this area. With only thirty-five percent lung function, Emily spends over three to four hours a day on treatments, injects multiple insulin shots, and takes countless pills to slow progression of her disease. Named a White House Precision Medicine Champion of Change, Emily has given talks at the White House, TedX, and Stanford University School of Medicine and MedicineX conference, among others. Emily holds a masters degree in Bioethics and certification in clinical ethics mediation from the University of Pennsylvania, where she also completed her undergraduate degree. And now, lets welcome Emily and MarySue.

MarySue Hansell
Hi Emily.

Emily
Hi, thank you so much for having me.

MarySue Hansell
Oh, wonderful, wed love to hear more about your story. Can you start out by telling our listeners a bit about what cystic fibrosis is?

Emily
Sure. So cystic fibrosis is a fatal genetic disease that primarily effects the lungs and the digestive system. And what it does, is it causes sticky mucous to build up in the lungs and airways, and it leads to life threatening lung infections. And I spend a lot of my day just trying, you know, doing different breathing treatments and airway clearance methods to try to, you know, move the mucous and control the infections that are always raging in my lungs.

MarySue Hansell
Oh boy. Now what has your experience been with CF?

Emily
So its sort of a funny question, I was, since its a genetic disease, I was born with the disease, and I was diagnosed at about six weeks old. And so, you know, I dont really know life without CF.

MarySue Hansell
Okay.

Emily
But, with that said, as Ive gotten older my disease has progressed, and so the role that CF has played in my life, excuse me, has changed. And over the past few years I have gotten progressively sicker. And I now have, you know, advanced stage cystic fibrosis. And so sort of the, I worked hard my whole life to integrate CF into a much bigger and fuller life, but as Ive gotten sicker, inevitably the intrusion of CF on my every day life has grown.

MarySue Hansell
What a challenge. Now, can you tell our listeners about the founding of Emilys Entourage, and what you hope to accomplish with that?

Emily
Yeah, so there have been some really big breakthroughs in the past few years for many people with cystic fibrosis. But there are over nineteen hundred different mutations of CF, and I happen to have a rare nonsense mutation. And unfortunately the breakthroughs that have happened, while they have been life changing for the people that they help, they do not address my rare form of CF. And so, you know, as we were watching all these advances happen, and you know, feeling so encouraged for so much of the CF community, it was really hard for me to sort of watch from the sidelines as all my friends got their lifesaver, and I was sort of waiting, you know, on the sidelines. And it occurred to us, you know, that we didnt have to just wait and wish, and that there was an opportunity, this was an opportunity for us to really like get involved and taking matters into our own hands. And so in 2011 my family, friends and I founded Emilys Entourage, which is a 501(c)3 that focuses on fast tracking new treatments and a cure for rare nonsense mutations of CF. And whats really exciting to us is that though theres only a small, you know, a small portion of us with nonsense mutations within the CF community. Nonsense mutations are actually the cause of many other genetic diseases.

MarySue Hansell
Oh.

Emily
And so theres really an opportunity to, you know, cross over to these disease lines and hopefully contribute to, you know, new treatments that can help a lot of people.

MarySue Hansell
Well thats really inspiring. Now how much have you raised so far?

Emily
So far weve raised over one point five million dollars since December 2011, and we are just embarking on our major annual campaign for, we have a big gala that launches the campaign on December 5th, 2015. And so, you know, hopefully that number will be rising quite soon.

MarySue Hansell
Wow, yeah. You want to tell us a little bit about the gala?

Emily
Sure, so every December we have a big fundraising gala, and we pride ourselves on making it, not just like any other gala, so you know, there are no white, you know, tables with white cloth, and its not black tie super formal, stuffy event.

MarySue Hansell
Okay.

Emily
We are super mission driven and, you know, there is not a moment that goes by that we dont remember why were there. And I think what really differentiates our gala from all those others is that, that energy and incredible community commitment and passion, is so, so, so palpable. And so its really a very magical feeling in the room. And so its held at Baldwin School in Bryn Mawr on December 5th, and well have about four hundred to five hundred people. You know we have drinks, and light fare, and then also have a really inspiring program. And so, you know, we really believe in the power of communities, and thats kind of like our pep rally. And so we also launch, each year we have a central video, thats sort of the centerpiece of our fundraising campaign, and we launch the video there. And this year the theme of our gala is taking off, EE is taking off, and it really feels like a very appropriate description of what this year is and where were headed.

MarySue Hansell
Wow, it sounds like its going to be a great event.

Emily
Yeah, were working hard and really looking forward to it.

MarySue Hansell
Now Emily you were recently named White House Precision Medicine Champion of Change, tell us all about that, it sounds very exciting.

Emily
Yeah, it was incredibly exciting and quite a shock, I was actually, I was vacationing in Italy, and I saw a missed call on my phone, only to later realize that it was a call from the White House, which is you know, the one call you never want to miss.

MarySue Hansell
Wow.

Emily
But fortunately I did eventually get in touch. So they were calling to inform me that I was named a White House Precision Medicine Champion of Change, which it was, you know, and I went down to the White House on July 8th for a whole day long event, where we were really helping to design the Precision Medicine initiative. And inform, inform the initiative with a, you know, a patient frontline perspective, and then we also, I spoke on a panel.

MarySue Hansell
Oh wow.

Emily
And met with all sorts of officials including Francis Collins who not only is the director of NIH, but he was part of the team that found the CF gene in 1989. So hes like a super hero in my world. And it was just an incredibly inspiring event, each person there had an amazing story, and it was very interesting because I was there as a patient, there were other researchers and you know, parents of patients and all different people whos lives have been touched by Precision Medicine, or have sort of hoped for Precision Medicine. And there was just an overwhelming feeling of both comradery and hope, and also, you know, tinged with sort of the urgency. And it was just incredibly powerful and I was just really, really grateful to be part of it.

MarySue Hansell
Oh well congratulations.

Emily
Thank you. You know to get that kind of recognition from the White House, really, it shows that Emilys Entourage and the work that were doing with rare nonsense mutations of CF is Precision Medicine in action. And that we really are the cutting edge of science and medicine and that is just incredibly encouraging.

MarySue Hansell
Well I bet that made you and your team feel really, really good.

Emily
Yeah, it was really, it was an awesome event and we really were so excited and honored to be part of it.

Raymond Hansell
Ill bet you were. Listen, for our listeners out there please keep with us, because this is an amazing and very, very inspiring episode here on BetterWorldians Radio. But right now we need to take a short break. When we return my co-host MarySue will talk more with Emily, Co-Founder of Emilys Entourage. In the meantime if you are a fan of BetterWorldians Radio, I urge you to check out our social enterprise called A Better World whose mission is to make uplifting games and apps to brighten the world. Our goal with everything we do here is do good, have fun, and change the world. Were committed to creating awesome digital products designed with a purpose of making a difference through optimism, altruism, and charity. And so far, to date, over thirty-five million good deeds have been done in A Better World by more than three million people. This summer we partner with World Relief, a nonprofit with a mission to stand up for vulnerable people around the world. Our players completed over a quarter of a million good deeds in the game, and so we recently released funds to provide solar panels to generate power for water pumps for people in need. Great job BetterWorldians. Well be right back with MarySue and Emily.

Raymond Hansell
Youre listening to Better Worldians radio. Were speaking with Emily Kramer-Golinkoff, Co-Founder of Emilys Entourage. Now heres Emily and MarySue.

MarySue Hansell
Emily you spoke recently at the Stanford MedicineX conference, can you tell us a bit more about what that event was and what your message there was?

Emily
Yeah, so I actually just got back a couple weeks ago from Palo Alto, I was there speaking at Stanford MedicineX, the conference, and also Stanford conference MedicineX Ed, which is a brand new conference. And Im also really, really excited to be an advisor for their E patients. And so the idea of Stanford MedicineX is to really harness emerging technology, and also, and engage all different healthcare stakeholders in improving healthcare. And they have a really strong commitment to the patient community. So they call patients E patients, patients that are equipped, and enabled, and empowered. And so I was an advisor to a group of E patients, and I also I gave a feature talk, and also was on a couple different panels.

MarySue Hansell
Oh.

Emily
And it is a completely life changing experience. You have all the, you know, the key opinion leaders there, and also, you know, unlike most medical conferences, you also have a ton of patients, and theyre usually the people that are sort of left out from these conversations.

MarySue Hansell
Yeah.

Emily
And the idea is that, were all coming together to collaboratively think outside the box, and sort of tackle the problem of healthcare together to try to make, you know, broad improvements.

MarySue Hansell
So the E patient stands for empowered patients?

Emily
Yes.

MarySue Hansell
Oh thats neat. And what was it that you advised the patients about?

Emily
Well so I was an advisor, kind of like a kid camp counselor to

MarySue Hansell
Oh, okay.

Emily
This is my second time there, I was there in 2013, and so there was a whole group of new patients, and its a really, you know, many patients have never been to a medical conference before, so its a really, its an overwhelming experience, and a lot of them are giving big talks and what not. And so I was really there to just, you know, help navigate the experience and help them, you know, reach their potential there and make all the possible connections, and have the greatest impact that they could. And then I also gave a talk about Emilys Entourage, and the name of the talk was Hacking Biomedicine to Save My Life.

MarySue Hansell
Wow.

Emily
And so I was really talking about harnessing collaboration across, you know, between researchers and also with providers. And how we are sort of bringing people together to, you know, hack the normal system, which usually takes decades and decades to bring about breakthroughs. Were really trying, were trying to move much faster than that, and so I spoke about that.

MarySue Hansell
I bet you did a great job, because you are a great speaker.

Emily
Thank you.

MarySue Hansell
Can you tell our listeners how they can support Emilys Entourage?

Emily
Yeah, so there are a ton of different ways that people can support Emilys Entourage. We are really proud to be totally community powered. And so we have this big gala coming up on December 5th, we would love for people to attend, you can find out more on our website, www dot Emilys Entourage dot org backslash gala. And then in addition to that, so there are opportunities for, you know, people to come, theres opportunities for individuals to be sponsors, for corporations to be sponsors, to donate auction items, we also need volunteers for the night, we need tons of in kind donations. But we also have, in addition to the gala, we have a team running in the Philadelphia marathon on November 22nd, we have a couple slots left there if anyone wants to join the team and have the very enthusiast group of cheerleaders on the sidelines. And then, you know, we always need volunteers for their talent, their time, their services, so there, and on our website there is a contact form where people can reach out directly to us. And then the other thing is that we have a really, really large social media presence on Facebook, and Twitter and Instagram, and we have been really unbelievably buoyed and uplifted by the power of our virtual communities, and so we would love to connect with people on there.

MarySue Hansell
Well we do encourage our listeners to look in and help donate, and if you can volunteer, definitely volunteer. Emily how do you hope the work being done at Emilys Entourage is helping to make the world a better place?

Emily
At Emilys Entourage I think that what, you know, Ive learned a few things personally. You know, the first is there is no, there is nothing in the world that is more encouraging than seeing, that when you put your story out there and you open your heart, how many people want to help. And I think that, you know, bringing that to the surface and shining a light on how, on how good people are is really incredibly powerful. And then sort of beyond that, as someone with a rare mutation of a rare disease, we call, we often say that Im an orphan of an orphan disease, and that can be a kind of lonely place, and sort of a bleak place to be when theres not that much on the horizon in terms of drugs. And I think what Emilys Entourage has shown me, and you know, the recognition from the White House as a Champion of Change has shown me is that, you know, in this day and age, no mutation, or no disease is too rare to matter, and I think thats a really powerful message that each person, you know, no matter your situation, no matter the disease you have, we all matter. And theres an opportunity for all of us to work together, I think when we work together amazing things are possible and weve seen that through Emilys Entourage and we have a lot of hope that amazing things will keep happening.

MarySue Hansell
Its probably just around the corner.

Emily
Hope so.

Raymond Hansell
Your hope and all of our hopes at the same time. For our listeners, you can learn more about Emilys Entourage by going directly to Emilys Entourage dot org. Emily wed like to thank you for joining us today on BetterWorldians Radio.

Emily
Thank you so much for having me, it was such a pleasure.

Raymond Hansell
What a great BetterWorldian. At the end our show, we like to share our BetterWorldians mission. We strive to make the world a better place by encouraging the very best in everyone. We focus on positive thinking, positive values and positive actions. In short our vision is to bring out the BetterWorldian in everyone so that we can all make it a better world. So until next time, be a BetterWorldian.