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2020 Top-Rated Nonprofit

Emily's Entourage

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Nonprofit Overview

Mission: Emily’s Entourage accelerates research and drug development for nonsense mutations of Cystic Fibrosis. By providing critical leadership and coordination, Emily’s Entourage drives high-impact research, cultivates multi-stakeholder collaboration, and facilitates information exchange to speed breakthroughs. Our goal is singular: to expedite life-saving treatments and a cure for those with nonsense mutations of CF who are waiting with bated and fading breath.

Results: Emily’s Entourage is an innovative 501(c)3 foundation that accelerates research for new treatments and a cure for nonsense mutations of Cystic Fibrosis, a fatal genetic disease afflicting Emily and many others. Since 2011, Emily’s Entourage has awarded millions of dollars in research grants and led worldwide efforts to drive high-impact research and drug development. The organization has been featured in the New York Times, STAT, CNN, Yahoo, AOL, People, The Philadelphia Inquirer and more.

Target demographics: find a cure for nonsense mutations of Cystic Fibrosis (CF)

Geographic areas served: Rare Disease

Programs: scientific research, scientific drug development, seed funding, grants, gene therapy

Community Stories

31 Stories from Volunteers, Donors & Supporters

Jamie A.5

Volunteer

Rating: 5

Emily's Entourage is a truly inspiring charitable organization. I have attended several of EE's annual fundraising events and have left each one of them feeling not only uplifted and optimistic about the kind of change that is possible in our world, but also impressed with the organization's ability to creatively host fun, meaningful and classy experiences for their "entourage" without overspending. EE is a smart and innovative charity that serves as a model for how all nonprofits should be run!

Volunteer

Rating: 5

Emily's Entourage was built to help both the namesake and many like her who have a type of CF that doesn't normal get funded research. It not only is a selfless mission, but one that is so important to a community that feels they do not have a voice.

When I met Emily in 2017, I was immediately captivated by her determination and story. This is not a simple project for her. This is a life saving opportunity for Emily and since has become the mission of her entire family. With every speech, event and campaign EE puts on, the entire KG family is there to speak, support and push for EE and for their sister/daughter/friend.

Now, I've helped to put together 3 fundraising events, all which were not only successful but so much fun too. There is life and joy within each day you are apart of EE. It is not somber, it is not filled with sorrow - EE celebrates life. EE encourages life. EE seeks life.

This charity is not only a place to donate money, but it's a place to connect, to be grateful for what you have and do what you can for those who do not have. I'm so proud to say that I am a part of finding a cure for nonsense CF with Emily's Entourage.

Sarah B.22

Donor

Rating: 5

Emily's Entourage is an amazing organization. It functions like it is larger than it is, and yet is so personal and feels like such a family. Rarely do you find such a well run organization that is for such an incredible cause.

Donor

Rating: 5

Emily's Entourage is an incredible organization started by a family in order to find a cure for nonsense mutations of Cystic Fibrosis which affects Emily and others with this disease. The money raised goes to research for lifesaving treatments, and hopefully in the near future a cure for these nonsense mutations of CF. EE works hard to find the best scientists who in turn work hard to find a cure. Emily, her family and this foundation are amazing and give their all to find a cure and provide hope for Emily and so many others with this type of CF. I am proud to be a member of Emily's Entourage!

Donor

Rating: 5

For me, Emily’s Entourage epitomizes everything that Emily Kramer-Gollinkoff and her family embody: the fierce, tireless determination to find the cure for people with nonsense mutations of CF, and doing so by reimagining every possible way of harnessing the best scientific minds and resources in order to fast-track their goal.
Emily’s Entourage is relentless in pursuing it’s goal, gives hope to people who suffer from other nonsense mutations, and has forged a path for other non-profits to follow.

Donor

Rating: 5

Emily’s Entourage is the most incredible organization and I’m so proud to be a committed member of the entourage from its inception. The work Emily’s Entourage is doing for the CF community and beyond is truly groundbreaking and I‘m praying 2020 will be the year for a CURE!!

Donor

Rating: 5

We only give to this charity. We know the family, yes. But what's special about this charity is that just about every penny given goes into research and not to high overhead or unnecessary costs.

Emily is a great person and her situation is dire. Her family has taken a personal cause and, from literally nothing built an incredible organization that's supported by thousands of individuals, scientists, companies and even celebrities across the world all with the goal of helping Emily...and the others who suffer from the same problem. We can't let this fail.

If you really, truly want to make a difference you can do so by making a difference in this woman's life and the others who know and love her.

Donor

Rating: 5

I have been involved with EE since it’s inception. It is one of the most unique organizations I have had the pleasure of working with. They have single handedly marshaled the support of an international cast of bio-medical superstars to attack a rare form of cystic fibrosis. EE has enlisted the support of an army of volunteers to educate and raise funds from potential donors to provide funds for the ground breaking research undertaken by the sponsored scientists. EE has enlisted the help of medical professionals and scientists to evaluate research that could potentially find a cure for this devastating and debilitating disease. A truly outstanding group of individuals, supporters and medical professionals working under the auspices of an extraordinary not for profit.

Laura E.4

Professional with expertise in this field

Rating: 5

Emily's Entourage was founded in the spirit of love, commitment and generosity. Emily's Entourage focuses on research and treatment for those whose medical profile has eluded traditional breakthroughs . Emily's Entourage offers a community of support and the possibility of medical breakthroughs to thousands of individuals and their families. Through their tenacity, dedication and medical funding, Emily's Entourage provides hope to those who deserve nothing less than the promise of a future.

Donor

Rating: 5

This is an incredible organization that is truly disrupting they way medical research is done for rare diseases. I am proud to be involved in an organization leading the charge!

Donor

Rating: 5

Deeply devoted team that truly cares about the cause and their donors. Very worthy organization.

Board Member

Rating: 5

EE is such an amazing organization! It's ability to engage and fund the top minds in the world relating to cystic fibrosis and nonsense mutations is truly remarkable and will undoubtedly lead to groundbreaking science and medicine. Everyone who hears about EE ends up falling in love with the people and organization because they are so genuine, motivated, and effective at raising and deploying funds that are ultimately going to save millions of lives. To see a grass-roots organization become such a proficient engine of science and innovation is both exciting and inspiring.

Previous Stories

Board Member

Rating: 5

Not only is Emily's Entourage an amazing cause that could potentially impact millions of lives across the globe, but it is also one of the most innovative and fastest-growing companies I have had the pleasure to work with. "EE" is, right now, conducting groundbreaking research that has the potential to not just save the lives of people with cystic fibrosis, but also the lives of the global population who have genetic "nonsense mutations" (these make up approximately 11% of ALL diseases globally!). Once a year, every year, EE hosts a private Scientific Symposium conference where all of the best and brightest minds in CF and nonsense mutation fields from across the globe come to collaborate and discuss their various findings and brainstorm on where the future of this science is headed. Emily and EE have been acknowledged at the White House as a "Champion of Change" for their role as pioneers in the Precision Medicine field, and Emily personally gives talks about this very unique and innovative approach to fundraising and nonprofit/patient participation all over the country, garnering national media coverage. In short, this local family-run grassroots nonprofit originally started to save just one life has grown into an impressive and cutting-edge nonprofit company that garners national press coverage and global scientific attention that now has the potential to help millions of people, and it is something I am extraordinarily proud to be a part of. The sky is the limit for EE!

Donor

Rating: 5

Emily's Entourage is doing important work on funding research to find better treatments for those living with cystic fibrosis nonsense mutations like my 8-year-old son. With life expectancy only in the mid-30s, the dedication of those affiliated with this nonprofit give us hope for more years with our child. No other charity is as singularly focused on this specific research challenge as Emily's Entourage, and they are making real scientific advancements.

Board Member

Rating: 5

Emily's Entourage is driven by passionate leaders and a strong grassroots community, laser-focused on driving cutting-edge research and creating hope for a breakthrough for those affected by Cystic Fibrosis (CF). The organization has been creative in its approach to raising money and building community and also to how it supports its mission to cure CF. By directly working with researchers and bringing together key players in the CF community (doctors, researchers, pharma, community leaders, patient families, etc.), EE has been able to fast-track research and bring immense hope to the 10% of the CF community orphaned by other recent breakthroughs. EE stays true to its mission and wisely uses its resources to raise awareness about this disease, both through in-person community events and online communities.

General Member of the Public

Rating: 5

Went to an Emily's Entourage event and had a great time. They're really trying to make a difference in the lives of people with cystic fibrosis.

Donor

Rating: 5


I attended last year’s gala as a corporate sponsor and I admired and was impressed by the amazing work that EE is doing to help those in the final 10% with CF.

I am extremely excited to be attending this year’s gala on December 7th as a corporate sponsor again. Being able to help in anyway I can gives me hope and I know that EE is the ones that can get it done.

Donor

Rating: 5

This truly is a great cause that doesn’t get enough care and attention. They are an amazing organization and something that I’m truly proud to have contributed to!

General Member of the Public

Rating: 5

I attended EE’s annual gala last year for the first time and was blown away by their commitment to finding a cure for people with CF. Really looking forward to going again this year on December 7!

General Member of the Public

Rating: 5

I couldn't be happier to be a member of the Entourage! EE is doing big things and making a huge impact in the CF community! Continue pushing for a cure!

Volunteer

Rating: 5

Emily's Entourage... Simply writing these two words and I already can’t help but to crack a smile. EE, an out-of-this-world non-profit whose mission is to fast-track breakthroughs for nonsense mutations of CF. That's how I describe EE, when people ask me who this non-profit I raise money for is. But I hope that when I say this, people understand that EE is also so much more than this. EE does more than raising money for CF: EE exceeds expectations. All expectations. They search for breakthroughs, they blaze frontiers, and they blind our world with unfailing motivation and hope. On a more personal note, it took them less than three short years to take me to places where I had never ventured before. To places where I would never have believed it would be possible to venture. To places I now wouldn’t leave for all the money in the world. Together, we built this unbreakable bridge between Paris and Philly. And we keep on crossing it.

I first heard of EE on November 2016. I was an average Parisian economics student. Until I randomly watched their campaign video and reached out to them. A couple of hours later, Emily replied. That’s the first time EE exceeded my expectations. Little did I know it would be the first time of a long series of fulfilled expectations. Since then, not a single day goes when I’m not thinking about EE. I’ve spent the last trimester of the last three years raising money for EE with my best friend. We’ve become EE action-addicts. They started a fire in my heart, in both of our hearts, that ignited instantly, and that is not about to extinguish. This purple fire will burn inside of my heart forever, for I am eternally admirative of their fight. But most of all, for I am eternally grateful for whom they’ve made of me.

I can’t wait until my last expectation is being fulfilled. I can’t wait for EE to stand, just for one day, for Expectation Exceeded, the day when CF finally stands for Cure Found…

Volunteer

Rating: 5

Dynamic, genuine, driven people. Always grateful for support.

Board Member

Rating: 5

Changing the way research is proceeding to help find treatments for CFers with nonsense mutations. The engage scientists, donors, CFers and their families and clinicians to create a community working for a common purpose - breakthrough treatment for all people with CF

Jarrod L.1

Donor

Rating: 5

Emily's Entourage are an amazing charity, its very inspiring to see Emily continually fight with all her might and power to drive change - striving to create a better life for her and also other sufferers that share the same mutations. The scientific board and leadership team are first class, you get the confidence when speaking and dealing with them that this is not just a dream it will actually happen and a cure will be found. I look forward to continuing to support Emilys Entourage

Volunteer

Rating: 5

Emily is by far the most persistent, courageous, brave, thoughtful, optimistic, kind and loving person I have ever met. She also happens to be living with advanced stage cystic fibrosis. The key word though for Emily and her story is LIVING. Emily is 33 and has decided to not wait for the medical world as we know it to find a cure for CF with a focus on rare nonsense mutations. In 2011 after facing a decline in her health Emily, along with some family and friends, decided to start Emily's Entourage, the only non-profit dedicated to fast tracking research and development for rare nonsense mutations of CF. Emily goes above and beyond to campaign for her cause but she does this not only for herself and others with CF but for all people who live with a rare disease. Emily realizes that she has the ability to use her voice and her story to fight, no matter what may be going on in her life. Despite her advanced stage CF and spending countless hours a day on breathing treatments, injections, and taking over 30 pills to try and keep whatever lung function she has remaining, Emily has found the time and strength to be a fierce and determined champion for CF. She also strongly believes in patient advocacy and fighting for who and what you believe in. Though she is small in stature she is a mighty force and not one to be reckoned with.

In just 7 years Emily and Emily's Entourage has raised millions of dollars with all of the money going straight to fast tracking breakthroughs. Emily and the Entourage have started Talee Bio which is a biotech company that will focus on gene therapy for CF. Talee Bio will work together with researchers at the University of Iowa and Philadelphia based venture firm, Militia Hill Ventures. Together they hope to be able to advance gene therapy and move closer to a cure. By finding a cure for nonsense mutations of CF, cures for many other rare genetic diseases can be found too such as muscular dystrophy and different types of cancer. In 2015, Emily was named a Champion of Change for Precision Medicine by the White House. She has also been featured on People.com, Time.com, The Doctor's, The Philadelphia Inquirer and more.

This will be my third year on the gala committee and I continue to be astounded by the work that EE does. It is a group full of people with huge hearts and giving spirits. I know and have seen with my own eyes how the work that’s EE does has changed lives and hopefully will continue to do so.

As someone living with a progressive neuromuscular disease, I know that all the work EE is doing could one day help not only myself but millions of others living with a rare disease. This past year as I have faced my own disease progression, Emily has been a steadfast, loyal and loving friend. Even despite the daily struggles of her own disease she never wavers and has been a listening ear and confidante. I truly value her opinions and thoughts more then anyone I know. It is because of Emily and all that she has taught me that I decided to donate my skin for research, dive deeper into genetic testing and have been a bit more open about my own disease, something that has never been easy for me. Knowing and watching Emily has made me realize that not only is it okay to share your story, it is important to share your story. You never know who might be listening or whose life you might touch. I know that Emily and EE have forever touched mine.

Volunteer

Rating: 5

This nonprofit does amazing work in support of Emily who has Cystic Fibrosis. They fundraise in efforts to find breakthroughs for CF. Emily herself and her mom along with the EE team have made incredible efforts to make more aware of this disease.

Board Member

Rating: 5

I'm a proud first year board member and in my fourth year of volunteering for Emily's Entourage. What strikes me most about EE is the laser focus on the goal at hand -- finding a cure for the 10% of CF patients for whom no cure is in the pipeline. No one else is fighting for these patients except EE. I have never seen a leaner or more nimble organization than EE -- every dollar and every minute is spent on the mission. It's remarkable to be a part of.

Donor

Rating: 5

This organization does amazing work to help the CF community. I had the opportunity to organize a Jeans Day collection at my school to raise funds for this great cause. Danielle Barsuglia provided me with all the information and materials needed to ensure that my event was a success. I am so glad I was able to connect with Emily’s Entourage!

Professional with expertise in this field

Rating: 5

Emily's Entourage is driven by a fabulous leadership team and group of devoted volunteers. Their passion, dedication, and heartfelt connections to the organization is present with every interaction, meeting, and event. All you want to do is help and see the organization flourish on their way of obtaining an all inclusive cure for those with Cystic Fibrosis—focusing on the 10% of the population with nonsense mutation currently with no therapies in the pipeline. A cure is needed now and it's needed fast, this tenacious group of individuals is on their way to accomplishing just that and more. Emily's Entourage is fueled by its supporters who drive the necessary research to make that mission a reality!

Volunteer

Rating: 5

I attended the Champions Kickoff event and was both impressed and inspired by Emily and everyone associated with this organization. After meeting Emily and her mother it became very clear to me how they have achieved so much in a short amount of time. I am very much looking forward to taking part in volunteer events moving forward.

Board Member

Rating: 5

When I first heard about Emily's Entourage, I was absolutely floored with how much they have accomplished since 2011. No one compares to their tenacity and determination to finding a cure for nonsense mutations of CF! I feel so lucky to be a part of such an amazing community.