Woman with cystic fibrosis uses the power of social media to find her own cure

Before you go, we thought you'd like these...
Before you go close icon

Meet Emily Kramer-Golinkoff. She's a daughter, big sister, cousin, granddaughter and friend. She's 31 years old, but Emily has Cystic Fibrosis -- advanced stage to be exact.

Cystic Fibrosis is a fatal genetic disease that affects lungs and the digestive system. Although there are 70,000 people living with the CF worldwide, there is no cure. Plus, her specific mutation means medical funding is rare.

The average life expectancy for someone with her type of CF is only 35-37 years old.

Although Emily was diagnosed with the disease when she was only 6 weeks old, she still had a normal life. Her parents made sure of that.

She was a superb student who received plenty of accolades, even graduating from the University of Pennsylvania. Later, she received her master's degree in bioethics from the University.

She did all that while taking more than 30 pills and shots each day, while receiving treatments and amid extensive hospital visits. She's a fighter -- that's probably why she was honored by the White House as a Champion of Change, and featured on Yahoo Health, People and Time.

But Emily hasn't done it alone. Emily and the rest of her entourage -- Emily's Entourage, to be exact -- has been with her every step of the way. As a community made up of thousands of supporters around the world, the Entourage has raised more than $2 million.

Scroll through to take a closer look at Emily's Entourage:

16 PHOTOS
Woman with cystic fibrosis campaigns for own cure
See Gallery
Woman with cystic fibrosis campaigns for own cure
Flu shot ✔️ One cold or flu is all it takes to trigger a life threatening lung infection for people like Emily. So you can imagine how scary flu season is for people like her! That's why, when September rolls around each year, Emily beelines to the pharmacy to be first in line for the flu shot. When it comes to protecting your heath and the people around you, there are many things in life that are out of our control. But boosting your immunity against the flu is one thing we CAN do. So this flu season, we here at EE encourage you to get yourself to your nearest flu shot clinic STAT! Do it not only to protect yourself from the nasty flu, but to protect the vulnerable folks around you, like infants, pregnant women, elderly and those with compromised immune systems -- people like Emily. One little prick for you, one major step towards herd immunity and better health for everyone around you! #fluselfie #flushotselfie #flushot #herdimmunity #curecf #cfawareness #cfaware #cysticfibrosis #emilysentourage #breethe #EEfluselfie
Today, Emily spoke on a panel about accelerating progress in rare disease treatment at the Cambridge Rare Disease Summit! Ok, we must admit that the hogwarts-like environment and British ah-ccents didn't hurt, but truly, it was such a thrill to participate on such a distinguished panel at this outstanding event and connect with the spectacular international rare disease community. Huge thank you to the Cambridge Rare Disease Network for this amazing opportunity!! #raredisease #crdn2016 #emilysentourage #breethe #cfawareness #cfaware #curecf #careaboutrare
Oh, just heading to Pittsburgh to casually join President @barackobama who will be hosting the @whitehouse Frontiers Conference on science, technology, and innovation tomorrow. UM WHAT?! Honored doesn't begin to capture how we feel to represent Emily's Entourage and our trailblazing efforts to accelerate precision medicine and build a disruptive model for fast breakthroughs among this distinguished group of innovators and rockstars! President Obama, here we come!!! #curecf #cfawareness #cfaware #cysticfibrosis #precisionmedicine #EEbreakingthrough #emilysentourage #breethe #FutureofHealth #WHFrontiers #potus #pmi
In #philly tonight? Head to @citytaplogan from 6-9 for the most inspiring happy hour to kick of our Emily's Entourage Champion campaign! Drink specials and appetizers all night long🍻 plus of course an appearance by our very own Emily! Let's celebrate getting a little closer to curing CF every day! #celebrate #cheers #careaboutrare #phillylife #phillyeats #centercityphilly #citytaphouse #inspiration #youngprofessionals #CFawareness #cysticfibrosis #cureCF #emilysentourage #EEchampions #brEEThe
Exciting news: we have a request for proposals (RFP) out via the Perelman School of Medicine at the @pennmedicine Disease Center! That means we've raised the funds to create a grant for an academic researcher to study Emily's specific nonsense mutation. This is at the heart of what EE is about -- driving research and creating space for limitless possibilities. Seeing the words "this grant is made possible by the Emily’s Entourage organization" on an RFP -- that's something to celebrate! 🎊💐🎉 #cureCF #cantstopwontstop #disruptors #research #science #knowledgeispower #cysticfibrosis #breethe #emilysentourage #raredisease #rarediseaseawareness #orphandisease @mdbride4rare
CALLING ALL RUNNERS! We invite you race the streets of the city of brotherly love during the annual Philadelphia Marathon (November 19-20th). Last year's team raised an incredible $20,000 -- imagine what we can do this year?! Emily’s Entourage covers the cost of registration for all runners who commit to raising funds for EE. Want more details? Email Angela at angelamarks39@gmail.com. Let's go Team EE! #phillymarathon #teamEE #run215 #runhappy #marathon #halfmarathon #emilysentourage #cureCF
Just two Ems casually chatting with lights blaring and cameras rolling. All for the 2017 campaign video debuting at the annual gala in Dec 3💡🎥 🎬 #savethedate #curecf #cfawareness #cfaware #cysticfibrosis #emilysentourage #videoshoot #breethe
Our allstar EEers @faskefoods @jake_kyle trekking to the top of the world in pursuit of magic to #CureCF!!! 🌄✨✨✨ you guys rock!!!! #cfawareness #cfaware #cysticfibrosis #emilysentourage #breethe #eearoundtheworld #eetravelstheworld #whereintheworldisee
CF can't stop Em from biking her way around Amsterdam 🚲 #curecf #eetravelstheworld #eearoundtheworld #whereintheworldisee #emilysentourage #breethe #amsterdam
A HUGE THANK YOU: Cousins Who Care -- a local group of cousins who train, eat pasta, and race together to benefit causes they care about -- selected Emily's Entourage as their cause for their sixth Broad Street Run... and trekked through the rain and wind to raise $2,789 for #CF research!!! <3 <3 <3 We are beyond thankful and grateful to be supported by such a dedicated, selfless family! #familymatters #broadstreetrun #teamEE #emilysentourage #cfawarenessmonth
These are (just some of) the ladies that raced #TeamEE to the finish line at the crack of dawn this morning in @pennmedicine's @mdbride4rare!!! Talk about love and commitment!!! These superheroes are the epitome! 🚴🏼🚴🏼🚴🏼🏆🏆🏆 #curecf #cfawareness #cfaware #cysticfibrosis #breethe #emilysentourage #cfawarenessmonth #raredisease
On 🔝 of the 🌎 #cureCF #cysticfibrosis #breethe #CFAware #CFAwareness #whereintheworldisee #eearoundtheworld Photo and caption credit: @hannahrkramer 😘
Em doing her thing vesting and nebbing after a long day of event planning in Brooklyn #CysticFibrosis #curecf #CFAwareness #CFAware #Breethe #EmilysEntourage
We are on @cnn!!!!! This is totally surreal!!!!! Huge thank you to the amazingly committed and talented folks at CNN for making this happen and creating such an exceptional piece! We are SO grateful!!! >>>link in profile #cureCF #cysticfibrosis #CFAware #breethe #CFAwareness #cnn
Our inaugural EENY fundraising total is in.... and it MIND BLOWING! Ready for this?! $110,000!!!!!!!!!!!!!!!! YOU GUYS!!!! Our hearts our exploding and we are blown away. We are eternally grateful for YOU, our Entourage, for fueling this most EPIC takeoff. We are inspired, motivated, energized and READY TO DO THIS. We can't stop here. We are taking off. Let's CURE this thing!!! DONATE. PASS IT ON. MAKE A DIFFERENCE. #eetakingoff #curecf #cfawareness #cysticfibrosis #breethe #cfaware #EENY #emilysentourage #makeadifference #wecandothis
of
SEE ALL
BACK TO SLIDE
SHOW CAPTION +
HIDE CAPTION

They've set up galas, fundraisers, conferences, research symposiums and the like. The agenda for the Kramer-Golinkoff family has been non-stop.

"Getting the CF community to now focus on this kind of mutation was the goal," said Kevin Foskett, the lead scientific adviser to Emily's Entourage. "Emily and her family want research focused on her mutation to be as focused and accelerated as possible." Her mutation "is responsible for disease in many other genetically inherited forms of disease".

So finding a cure for Emily could mean finding a cure for countless other diseases.

And how is she campaigning for a cure? With the help of social media. It's a "lifeline" for Emily and her family. "Every single person that we meet is potentially helpful. And nothing will stop us from asking," she said.

More in lifestyle
Cigars, cigarettes and cigarillos: How each affects health
12 small changes to help you get in shape
Too much heat in the kitchen can increase the risk of heart disease

Read Full Story

Sign up for Best Bites by AOL and receive delicious recipes delivered to your inbox daily!

Subscribe to our other newsletters

Emails may offer personalized content or ads. Learn more. You may unsubscribe any time.