Philadelphia Marathon race weekend is here, #TeamEE! ????♀??? You’ve trained, you’ve pushed, and soon you’ll cross that start line with the power to change lives for the final 10% of the #cysticfibrosis community. Every mile you run is a step closer to breakthrough therapies and a future where everyone with #CF can breathe easier. ?? We’re cheering you on every step of the way! Let’s crush this race and make strides toward a cure. Drop some encouragement for our amazing team below! ?? . . . #GoTeamEE #PhillyMarathon #CureCF #CFWarriors #runphl2024
关于我们
Emily's Entourage (EE) is an innovative 501(c)3 foundation that accelerates research for new treatments and a cure for individuals in the final 10% of the cystic fibrosis (CF) community that do not benefit from existing mutation-targeted therapies. CF is a fatal genetic disease primarily affecting the lungs and digestive system. Founded by Emily Kramer-Golinkoff, a woman with advanced stage CF, and her devoted friends and family, the organization has been featured in national media, including the New York Times, STAT, CNN, People, and more. Since 2011, Emily’s Entourage has awarded millions of dollars in research grants, launched a now-acquired CF gene therapy company, developed a patient registry and clinical trial matchmaking program to accelerate clinical trial recruitment, and led worldwide efforts to drive high-impact research and drug development. The organization’s work is particularly critical now as revolutionary breakthroughs are available for roughly 90% of the CF population, but those in the outlying 10% that unfortunately do not benefit from these major advances. The work of EE is laser-focused on changing that — and doing it fast, so nobody is left behind
- 网站
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https://www.EmilysEntourage.org
Emily's Entourage的外部链接
- 所属行业
- 研究服务
- 规模
- 2-10 人
- 总部
- Merion Station，PA
- 类型
- 非营利机构
- 创立
- 2011
- 领域
- Cystic Fibrosis、Fundraising、Personalized Medicine、Healthcare Improvement、Innovative Drug Therapy、Grant Funding、Clinical Trials、Publications和Lobbying
地点
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主要
获取路线
PO Box 71
US，PA，Merion Station，19066
Emily's Entourage员工
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Michael Golinkoff, PhD, MBA
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Beth Lavin
Founder @ First + Constance | Special Projects Consultant | Engaged Board Member and Community Leader
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Rachael Packer
Beautycounter Consultant at Beautycounter
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Mariah Oakley
Senior Nonprofit Operations Leader | Real-World Strategic Planning | Operational Efficiency | Human Resources | DEI Initiatives
动态
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?? Did you know? Emily’s Entourage’s website is now available in multiple languages, including Spanish, Portuguese, Brazilian Portuguese, Hebrew, French, and French Canadian! Because the truth is that #CF knows no geographical boundaries, and so we're making sure that people from the whole global #cysticfibrosis community can connect with our mission to bring lifesaving breakthroughs to everyone with #CF who does not benefit from currently available therapies. No matter where you are or what language you speak, we're working together to accelerate hope and progress for everyone impacted by CF. ?? ?? Explore our site now at https://lnkd.in/gf-6v69X . . . #CureCF #CFWarriors #CFResearch #Translations #ExpandingAccess
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???? We believe that people with #cysticfibrosis should be equipped with information to make their own choices about clinical research and care. When you join CF Clinical Trial Connect, you gain early access to information about clinical trials — delivered directly to your inbox.?? ?? Learn more and register today: https://lnkd.in/dstcu8Df . . . #CureCF #CF #CFResearch #CFClinicalTrials #CFirl
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More than 10% of people with #cysticfibrosis don’t benefit from current CFTR modulators. We’re on a mission to change that — and do it fast. ???? ?? Learn how Emily’s Entourage CF Clinical Trial Connect is helping to accelerate breakthrough therapies for those in #CF community who feel left behind: https://lnkd.in/dstcu8Df . . . #CureCF #CFirl #CFResearch #ClinicalTrials #CFWarriors
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?? BIG NEWS ALERT ?? Today, it was announced that Spirovant, the #cysticfibrosis gene therapy company that EE helped launch (previously named "Talee"), has dosed its FIRST patient with its gene therapy drug candidate as part of its clinical trial of SP101 + Augmenter for the treatment of #CF. ?? This is a mind boggling moment for us. Back in 2015, we contracted a management company to explore business opportunities to help make science advance faster for those in the final 10% of the CF community. We connected them with all the key players and when they found a research project that they thought was worth spinning out into a company, we gave them the seed funding to make it happen (fast). Nine years later and that has resulted in a drug candidate being administered to a person with CF!!!! ???? Do you realize how *significant* that is? Together, we brought a drug candidate from the earliest stages of preclinical research through cell, animal, and safety testing, and regulatory approval to start a clinical trial on people with CF. Talk about a full circle moment. We want to take a moment to THANK YOU for your incredible support. It is because of YOU that we are here and there are truly no words adequate to express the depths of our gratitude to you for making this kind of progress possible. ?? Read more >>> https://lnkd.in/gCWWJn4m . . . #CureCF #Final10Percent #GeneTherapy
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A heartfelt congratulations to our co-founder, Emily Kramer-Golinkoff, for being awarded the 2024 Award for Leadership in Personalized Medicine by the Personalized Medicine Coalition! Diagnosed with #cysticfibrosis as an infant, Emily has used her personal experience to speed groundbreaking research, drug development, and advocacy for those in the final 10% of the #CF community who await lifesaving breakthroughs. Join us in congratulating Emily on this very meaningful and well-deserved honor! ??
It’s with great honor and pride that we recognize?Emily Kramer-Golinkoff,?Co-Founder of?Emily's Entourage, as the recipient of this year’s Annual Award for Leadership in Personalized Medicine. This accolade is presented to individuals whose remarkable contributions in science, business, policy, and advocacy have driven the limits of personalized medicine. ? Emily has made significant strides in the field of cystic fibrosis (CF), particularly focusing on rare nonsense mutations. Diagnosed with a rare mutation of CF herself, Emily has used her personal experience to drive groundbreaking research and advocacy. Through Emily's Entourage, she has accelerated the development of life-saving treatments by raising millions of dollars and fostering collaborations with top researchers, pharmaceutical companies, and the CF community. ? Genevieve Mack?accepted the award on behalf of Emily from?Brian Munroe, PMC Founder & Board Member, recognizing Emily's relentless efforts to transform the landscape of CF research and her dedication to finding a cure for all CF patients, especially those with rare mutations. This honor underscores her impact on advancing personalized treatments and improving the lives of countless individuals living with CF. ? Congratulations once again to Emily on this well-deserved honor! ? #PMC2024 #PersonalizedMedicine ?
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??♂? Meet the #TeamEE Runners Racing for CF Breakthroughs! ???♀? In just a few weeks—on November 23 and 24—our 30 passionate #TeamEE runners will take on the #PhiladelphiaMarathon, not just for the thrill but to fuel crucial #cysticfibrosis research and bring hope to the 10% of the #CF community still waiting for life-saving breakthroughs. From clever training hacks (hello, stroller resistance training!) to go-to playlists (High School Musical, anyone?), each runner brings their unique story and unstoppable spirit to the team. ?? Read more on the EE Blog >>> https://lnkd.in/dn8CtFsV . . . #CureCF #RaceForACure #PhillyMarathon #Marathon #CFResearch #CRirl
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?? NACFC 2024 Recap: Top Takeaways for the Final 10% from Boston! ?? In a brand new guest post from our Chief Scientific Officer, Chandra Ghose, PhD, we’re excited to share key scientific takeaways from NACFC 2024 for the final 10%! ?? From revolutionary gene therapy innovations to groundbreaking in-utero CRISPR delivery, these advances are lighting the way toward real, life-changing progress for those in final 10% who don’t benefit from current therapies. ?? Catch our top takeaways and what they mean for the final 10% >>> https://lnkd.in/gJwxddFH . . . #NACFC2024 #CFResearch #CFCure #CureCF #CFirl
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?? Attention Researchers - New Funding Alert: Emily’s Entourage is now accepting applications for our 2024 CF Research Grants! EE is on a mission to accelerate breakthrough treatments and a cure for people with #cysticfibrosis who are not able to benefit from current CFTR modulators due to genetic ineligibility, side effects, or suboptimal responses. ?? We’re seeking innovative research proposals in: ?? Nucleotide-based therapies ?? Gene delivery technologies ?? Solutions targeting Staphylococcus aureus & other critical pathogens in CF ?? Drug repurposing ?? Promising early-stage research ?? Funding: Up to $100,000/year for two years + indirect costs ?? Deadline: December 20, 2024, 11:59 pm ET ?? To learn more and apply visit: https://lnkd.in/gGUz5J_G . . . #CureCF #CFResearch #Research #GrantFunding #CF #CFWarriors #ScienceGrant #Funding #NewGrant
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??? It’s November 1st, and you know what that means—it’s officially #PhillyMarathon month! ?? With the big race just a few weeks away, we want to share a HUGE thank you to our Philly Marathon sponsor, Firstrust Bank! ???? #TeamEE runners have been training hard for the 8K, half, and full marathon events. Every step and dollar raised moves us closer to the ultimate finish line: breakthrough treatments and a cure for 100% of the #CF community. ?? Thank you, Firstrust Bank, for your unwavering support and helping fuel lifesaving breakthroughs for the final 10%! ?? Visit their website >> https://www.firstrust.com/ . . . #CureCF #CysticFibrosis #CFResearch
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