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
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.
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!
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!
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.
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!