Emily's Entourage

My family has been supporters of EE's nonprofit for many years and it is truly such an incredible organization. It's truly inspiring the work that they are doing at EE. The team at EE is truly making a difference in the CF community and brings to it hard-work, devotion and kindness. Such an amazing group of people and organization at large.

Emily's Entourage is truly one of the outstanding nonprofits with which we have had the pleasure of being associated. The passion that Emily and her family bring to the operation of the organization is truly astounding. The growth that they have enjoyed since the entity's inception is a testament to their creativity, diligence and hard work. We are so proud to support their efforts and cannot think of a charitable cause we feel more strongly about. We attend the gala annually and have been enthusiastic donors and followers since learning about the cause.

EE is such an important organization fulfilling a critical need in the CF space. The dedication of its members and especially its founders is truly inspiring. I am so honored to be part of the EE family and hope others will continue to help get the word out!

So many with CF have had the opportunity to have their life changed for the better by Trikafta. It is why we fight so hard for the 10% just like Emily who want more than anything to find their own drug, like trikafta, to be able to live out their lives, hopes and dreams free from the constraints of what the 10% have to go through day in and day out. Finding a drug for the 10% might even help all who live with CF and other chronic illnesses. I will forever be a part of Emily's Entourage and all of the incredible work they do.

There truly are no words to describe or express the amazing non profit that is Emily's Entourage. For most of my adult life I have tried to find organizations I want to be a part of. It took many years but I finally found the one that I chose and has felt like home. Emily's Entourage is made up of the most caring, kind and loving group of individuals. Emily's battle has brought us all together and we stand by her side and her families side as they fight with every ounce of their being to find a treatment for people like Emily who fall in the 10% for whom their is no treatment. As the mother of someone who is involved in EE's gala committee it is rare to find a group, an organization and the work they are doing as something you truly believe in and want to be a part of. And who knows, maybe one day EE's work might help my own daughter.

My wife and I give to a few non profits each year-we take a lot of time to pick and choose which ones we would like to donate to. Our granddaughter became very involved in EE and shared with us about Emily, her story and what Emily's Entourage does. Right away we looked over their website, watched videos about EE and decided that this is a non profit we wanted to donate to. We believe in their mission and as the years go by we are blown away by all they continue to accomplish. We truly believe that the work EE does is life changing and we will always continue to support the hard work they put into finding a cure for the 10% like Emily who have no treatments available at this time.

First time donator after hearing about the great work of this organization! One of a kind group focusing on the final 10% of the CF population.

I am in constant awe of EE and the work they are doing! This nonprofit had the hardest-working, most impressive team; is deeply thoughtful and careful in investing my donations; and has the most dedicated entourage of donors. What an important cause, and it’s the absolute best group of people to be leading the charge!!

I have been a member of the amazing Entourage since the first year and watch it grow. This incredible nonprofit is funding research for Cystic Fibrosis and other nonsense mutations. The work that is being done is so important and can really make a difference for people that did not think it was possible. It has been an honor and extremely meaningful to be a part of.

EE is the working hard to close the gap for the last 10%. Nothing but praise for these folks!

EE is an extremely selfless group of individuals working to benefit humanity :)

Such an incredible organization that is driving hope for the final 10%!

Emily’s Entourage is Family! They are the most incredibly dedicated and loving people you will ever know! What they have accomplished with EE from the start is nothing short of miraculous !
They will get their last 10% with all the incredible minds, love and support that surrounds them!
Please continue to support this amazing organization. It’s a matter of life and Breath!

Emily’s Entourage is truly like no other organization I have ever seen. They have the mind of the most sophisticated business but the heart of a mom and pop store. Every contribution large and small is appreciated. Every move is calculated to change and save lives. There’s relentless attention to detail. Being involved has made me feel empowered that I’m doing something good and in awe that they accomplish so much than humanly possible. Although sometimes it feels daunting, if anyone can change the future, Emily and her mighty entourage can!

I love Emily’s Entourage! What an incredible organization with the most dedicated and intelligent leadership

A great organization that is truly making a difference!

The best people in the whole world- caring, kind and driven!

Our family cannot say enough about EE! We have a child in the final 10% of the CF population who does not benefit from the life-saving therapies available to the other 90%. EE is working with the best and brightest scientists and other partners in the CF community and academia to fast-track breakthroughs for this vulnerable population. Failing fast and never accepting "not possible" are keystones to their drive. We are forever grateful for the tireless work they do, for the hope they are restoring, and for never giving up. Mountain movers. Ground shakers. Perpetually optimistic. Smart. Strategic. Consensus builders. All rolled into one.

Emily’s Entourage rocks!! They never stop! They are constantly searching for better science and scientists with who to work. They are engaging and are the voice for the 10% of those CF patients with mutations who remain to be helped by all of the CF drugs on the market. The organization might be small but it is indeed mighty!!

Incredibly fierce and innovative leadership with Emily at the helm of her dedicated Entourage. What they have accomplished in a short 10 years rivals organizations double their size and scale due to their passion. urgency for a cure, resourcefulness and collaborative mindset.

I've been impressed by EE's work every year since I came across the organization. They do an incredible job at raising awareness as well as increasing research for the underserved CF population! Keep it up!

On the evening that we met Emily's younger brother we learned of his family's quest to find a cure for nonsense mutations of CF. His explanation of the family's passion, emotion, positivity and tremendous strides made for research in the CF community made me an immediate devotee to Emily's Entourage. This is a non-profit organization that is truly grass-roots - from
a fledgling idea mentioned on the floor of their living room, their determination and hard work ultimately became recognized and honored by The White House. To meet Emily and her family, and to hear her brother speak with such admiration, devotion and love for his big sister made me realize that Emily's Entourage was a cause doing great good in this world - I had to be a part of their crusade.

I have been involved with Emily's Entourage since 2017, when a friend of mine, who is on their board, invited me to an EE event which was filled with so many people from the community and what struck me was the love I could feel in the room. I joined the gala committee, and what makes this charity organization so near and dear to my heart is that Emily and her mom Liza, are always at every meeting, leading the group and, again, filling the room with such love and creating such a warm and appreciative atmosphere, whether we show up for even just one meeting or giving just one dollar. To be part of a charity, led by someone who is fighting for her life, but more importantly, fighting to find a "cure" for everyone and anyone who could benefit from the research that our funds go towards, is remarkable. I continue to help and give because of this family's continued commitment. I truly feel as if I am part of this family, because they make each and everyone of us feel so special.

I have been involved with Emily's Entourage since it was founded. The organization remains true to its mission of funding research to address the medical needs of patients that traditional medicine has marginalized. Emily's Entourage is professionally managed, is transparent in their actions and provides concrete hope for countless individuals and their loved ones in the form of innovative medical research.

Emily's Entourage, and its leader, Emily Kramer-Golinkoff, empowers those who have been excluded from current life-saving medication, by funding cutting-edge research on nonsense genetic mutations. Additionally, this nonprofit advocates for the valuable and precious lives whose suffering and demise will be significantly positively altered from research breakthroughs, and gives concrete hope to cystic fibrosis patients of all ages, who feel that they have been forgotten by the reasearch establishment. The leader, Emily Kramer-Golinkoff, devotes her daily life to this great mission and is extremely brilliant and knowledgeable, not only regarding the disease itself, but also how to best influence the outcome for present and future patients in the 10% of the CF population currently suffering with no solution. The reasearch in this area will undoubtedly benefit patients suffering from numerous other genetic diseases caused by nonsense mutations. This is a truly heroic nonprofit with transparent financials and a spiritual flame which burns bright, due to the devoted leadership.

Hayley

It is hard to put into words what Emily’s Entourage truly means. Since I first met Emily, I was drawn in by her passion for life, family, community and her determination to find a cure for Cystic Fibrosis, focusing on rare, nonsense mutations.

I have been part of quite a few non profits and have never come across one like Emily’s Entourage. The research they do is mind blowing and it has already made such a difference in the CF community. If there was a book offering info on the perfect way to run a non profit, Emily’s Entourage would be on the front cover. EE is run by the hardest working people I have ever met and as a volunteer I can say that the EE community is like no other. It is inspiring to see so many people join together to fight a fatal, genetic disease. The people who are a part of EE take part not only because of their love for Emily and her family but because they believe so deeply in the work that EE does. It has already touched so many people and the medical community has been deeply impacted by the work and research EE has done.

Since meeting Emily, I have learned so much. As someone with a rare disease myself, having Emily as a friend is something that has meant more than I can put into words. It is just one of the reasons I chose to become involved with Emily's Entourage. It is very clear from the research that when a cure is found for CF it can also greatly impact others with rare diseases, like myself. That in and of itself is quite a feat!

I want nothing more than for my friend and all those with CF to have a chance at living a full life-one where they have the opportunity to take a deep breath and live a long, beautiful life. I will forever be a part of this beautiful community ������

We have known Emily and her family for over 25 years and they are the heart and soul of this nonprofit. Fueled by their passion and love for this amazing young woman, the entire community is involved in finding a cure for the CF mutation that she has.
We are ever humbled by their optimism and courage and feel blessed to be a small part of this mission.

Emily’s Entourage is an extraordinary organization that began with the determination and courage of one family to extend recent life-saving treatments and real hope to the remaining ten percent of people with CF who do not yet benefit from this novel class of treatments. When Emily learned that the new treatments would not help the 10% of people with CF with her nonsense mutation, she and family mobilized.

EE is laser-focused on developing and bringing a therapy as fast as possible to those with nonsense mutations for this disease. The organization has raised over 4 million dollars thus far, all funneled directly into the science of creating an effective treatment. EE is truly a lifeline that brings hope, information and resources together for the entire CF community and for researchers.

To me, Emily's Entourage stands in a non-profit class of its own. The urgency of the organization's mission accelerating research for new treatments and a cure for non-sense mutations of Cystic Fibrosis (CF) is made distinctly with Emily battling this fatal genetic disease herself as the laser-focused, brilliant and driven Entourage leader. Emily's Entourage is baked in love first and foremost with Emily's incredible family, friends, CF families from around the globe and businesses alike. Emily's drive and quest for a cure against time and difficult odds in a sea of deadly health challenges is what compels me to be a part of the Entourage. The love and appreciation for helping accomplish the EE mission combined with Emily and her family's determination and optimism is like no other non profit I have supported.

I met Emily and became aware of Emily's Entourage through my son and his connection to the Kramer-Golinkoff family. I was immediately bowled over by their intelligence, passion and determination to find a cure for the 10% left out of the advances made for the majority of cystic fibrosis patients. My connection is personal, not just because of my son's friendship with the family. I had a brother who died from the disease 20 years ago. I know first hand the struggle, both for the patient and their family. Emily's Entourage is a powerhouse. From humble beginnings at a kitchen counter the organization has grown into a game changer for thousands of young people, and thousands more for generations to come. You could not find a more brilliant spokesperson than Emily herself. Her willingness to share the most intimate parts of her struggle inspire everyone she meets to become part of the solution. The partnership between this organization and the researchers and scientists they support will literally change the world. For a funder, to know that the money they contribute will provide tangible life changing results is a gift. I am honored to be part of the "entourage" and look forward to meeting young beautiful humans whose lives have been saved by Emily's Entourage and the work that they do. I work in the non profit world and I have never seen a better run, more dedicated, more talented group of individuals working relentlessly towards their goal. It is inspiring.

I recently got involved with Emily's Entourage and have been really impressed with the work they are doing. They're aggressively pursuing research that has the potential to not only make a difference for people with cystic fibrosis, but also for 30 million people worldwide with rare genetic diseases. I cannot recommend this organization enough!

I have worked for the last 4 years with Emily's Entourage and have been wowed by both the Emily's Entourage family but also with the supporters who turn up time and again, in person and virtually, to find a cure for CF. Even when more CF patients found a treatment, Emily's Entourage held a hand out to the last 10% and said "You are not forgotten!" Their focus on finding a cure for every patient with CF is both awe inspiring and heartbreaking. They remember those who are no longer with us, those fighting with their last breaths, and those who will come after.

I can't stress enough how wonderful Emily's Entourage is for donors, CF families, and scientific researchers. They are truly grateful for any support that they get and they are genuinely thankful for everyone who gives a donation, donates their birthday, attends an event, or sends a birthday message to Emily.

I can't wait to attend another Evening with Emily's Entourage and see what a community coming together can do after living as isolated a life as CF patients have in past.

My wife and I have been regular donors to EE from almost the beginning. We have attended at least one of the annual kick off meetings as well. The organization's work from the beginning has been extraordinary. They have been on the forefront of increasing awareness of those who suffer from Emily's rare form of CF (as well as CF generally). The EE organization and more specifically Emily have been an inspiration to all those who seek to "call to action" the scientific and medical communities to find a cure as soon as possible. We will continue to support EE and pray that a cure will be found!!

Our family has proudly supported Emily’s Entourage for many years. We follow the progress, read the briefings and have attended many of its functions (both live and virtual). It’s board are leading community members and its scientific advisors are internationally known researchers and academics. There is no administrative waste and every dollar is used to find treatment and a cure. There are few organizations that have accomplished as much as EE has. We are truly honored to participate in this foundation.

Emily's Entourage is a fantastic organization doing the most important work to benefit those individuals with Cystic Fibrosis who currently have no life-saving treatment. It is very well run and well managed. I've been a donor for many years and have attended numerous events -- each one is better than the next. The research supported by EE has the potential to reach not only those suffering from CF but also many others with other genetic mutations. We are proud to support this valuable and important non-profit and recommend others to consider doing the same!

I have been a donor for many years and have watched in awe and admiration as EE has grown from a small charity with a big heart to an incredible force of positivity and change. EE's leadership is professional, dedicated and a true inspiration to everyone. I am so proud to be a donor --- not only do I believe in the cause, but I am confident that EE is making an enormous difference.

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!

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.

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.

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!

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.

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!!

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.

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.

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!

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

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.

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.

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.

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.

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.

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!

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!

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!

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

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

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

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.

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.

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!

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.

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.