You didn't meet Emilly Kramer-G., patient advocate at the White House? See her at Doctors 2.0 & You Paris May 26-27 #doctors20

The Doctors 2.0 & You  patients-included community is beyond thrilled that we will be receiving Emily Kramer-Golinkoff in Paris as a guest speaker at the 6th Edition at the Cité Universitaire. Says Doctors 2.0 & You founder,  Denise Silber, "Emily  is the empowered patient's 'empowerer' and we met at one of my favorite places, Palo Alto, at Stanford Medicine X, sister conference to Doctors 2.0 & You". 

In addition, and she did not mention it during this interview, Emily was invited to the White House in 2015 for President Obama's Precision Medicine Initiative. She was "hero of the week" in People Magazine and presented by Time Magazine.

(Emily is second from right. Let's do a shout-out to Hugo Campos, 5th from the right, another ePatient met at Stanford Medicine X.)

Q1. Please tell us a bit about yourself, your work, anything personal you’d like us to know, and do include a fun fact.  My name is Emily. I'm 31 years old with Cystic Fibrosis and Cystic Fibrosis related Diabetes. I'm from Philadelphia, Pennsylvania, where I run a foundation that I started with friends and family in 2011 called Emily's Entourage, which aims to fast track research for new treatments and a cure for rare nonsense mutations of Cystic Fibrosis.  Fun fact -- I wear size 4.5 shoes (which in Europe is just under size 35).
  
Q2. How about a quick word on ? time management ? ?  What is your daily life like, balancing your work, your foundation, your life as a patient? 
 Time management is a constant struggle for me! My days are filled with medical treatments, meetings, phone calls, email correspondence and most of it usually happens over coffee. We joke that we run our foundation from local coffee shops. Between running a foundation, traveling around the country for patient speaking and advocacy opportunities and doing 3-4 hours of daily medical treatments (when I'm healthiest), I've become quite well versed at multi tasking. I have intricate systems for managing my inbox and I use my treatment times to respond to emails and also connect with the online CF community.  
 
 
 
Q3. Do you recommend any special ? good health habits ? whether about diet, exercise, meditation… that have made a difference for you? 
 
I spend many hours on medical treatments each day and it's been well over a decade since I've missed one. They're the first thing I do when I wake up in the morning, the last thing I do before bed, and by midday, I'm craving another treatment session. Those treatments let me breathe, they keep me alive, and they allow me to spend the rest of my time pursuing all the things I want to do in the world. That's the most motivating force possible -- looking around at the world and my bucket list and seeing all the things I still am dying to do. 
I'm also a big believer in eating healthy, staying hydrated and being active. I wear my Fitbit religiously and I strive for 10K steps per day despite advanced lung disease, which certainly makes that goal harder. 

Q4.  Which are your favorite health apps or digital tools?

Fitbit, Apple Watch, and Google forms that I've created myself to track various health metrics like blood sugar and insulin usage.

  
Q5. You’ve never been to Doctors 2.0 & You. But you have gotten a lot of exposure to it virtually and in seeing me at Stanford Medicine X?  So, what do you value about this event? What made you want to participate?  
I'm so looking forward to connecting to the international digital health community. I've been fortunate enough to be part of Stanford Medicine X since 2013 as well as many other exciting conferences and initiatives within the United States. These experiences have been totally transformative for me and I can't wait for my advocacy to take on a new global dimension and to have the opportunity to learn from peers and fellow health care change-makers from all around the world. I have so much to learn and I'm so excited to get started! 
  
Q6. And finally, please give us a teaser about what you might discuss in Paris, during your talk. 
 
I'll talk about the importance of shattering the ivory tower of biomedical research and clinical care by meaningfully incorporating patients in every part of the process -- to expedite progress and deliver life-saving breakthroughs in time. The power of infusing biomedicine with stories for humanity and urgency -- to harness the power of communities to spur progress and promote idea sharing and collaboration. How in the era of precision medicine, where therapies are becoming increasingly personalized, each person has to be his or her own advocate and mobilize a network for maximum impact. Social media is an invaluable tool for building community, telling stories, and rallying support for rare mutations of rare diseases. 

Emily's bio

Emily Kramer-Golinkoff, a 31 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 also a nationally recognized patient advocate and speaker and serves as a strategic advisor to the Penn Social Media and Health Innovation Lab.

Energized by recent breakthroughs for other CF mutations, Emily and her Entourage have raised nearly $2 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, biotechnology and pharmaceutical companies 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.

Named a White House Precision Medicine “Champion of Change,” Emily has given talks at The White House, TEDx, ONC Consumer Health IT Summit, University of Pennsylvania’s Annenberg School for Communication graduation, and Stanford University’s School of Medicine and Medicine X Conference, where she is an ePatient Advisor and member of the Precision Medicine Advisory Panel. Her story has been featured on People.com, Time.com, Yahoo Health and other media outlets.

Emily has a master’s degree in bioethics and certification in clinical ethics mediation from the University of Pennsylvania, where she also completed her undergraduate degree.

You can follow Emily at @EmilyKG1 and Emily's Entourage at @EmsEntourage4CF.