Emily's Entourage

As 2024 comes to a close, we’re reflecting on a year of monumental progress—none of which would have been possible without YOU, our incredible Entourage. 💜 This year, we: ✨ Awarded our first-ever Collaborative Grants to trailblazing research teams working on innovative therapies for the final 10% of the CF community. 🌍 Launched CF Clinical Trial Connect, a groundbreaking global database now linking participants from 50 countries and 47 states to clinical trial opportunities. 🎉 Raised a record-breaking $1.34 million at our annual Evening with Emily’s Entourage gala, Efflorescence, fueling future research and breakthroughs. 🔬 Celebrated Spirovant Sciences, a clinical-stage gene therapy company that we helped to launch, dosing the first patient in its SAAVe Phase 1/2 clinical trial—a pivotal milestone for CF gene therapy research. Your steadfast support is at the heart of making this all possible. Together, we’re driving real, transformative change for those with #cysticfibrosis still waiting for lifesaving breakthroughs. As we look to 2025, we’re filled with hope and determination to achieve even more, even faster. Here’s to a new year of collaboration, progress, and FAST BREAKTHROUGHS! . . . #CureCF #CF #CFWarriors #HappyNewYear #NewYear #2025

Grateful beyond words! 💜 To the extraordinary organizations, partners, clinics, and individuals in the CF community from around the world—THANK YOU for championing the launch of CF Clinical Trial Connect, the only global patient database exclusively for people with #cysticfibrosis who do not benefit from CFTR modulators. Your support is igniting hope and driving the development of breakthrough therapies for the final 10% of the #CF community worldwide. 🌍 Together, we’re not just imagining a brighter future—we’re pushing to create a world where no one with CF is left behind. 💪 Learn more: https://lnkd.in/grgpT9Et . . . Cystic Fibrosis Trust Instituto Unidos pela Vida CF Together The Bonnell Foundation: Living with Cystic Fibrosis Boomer Esiason Foundation Cystic Fibrosis Research Institute Rock CF Foundation The National Organization of African Americans with Cystic Fibrosis Middle East CF Association (MECFA) CF Turkish Association CF Vests Worldwide CF Roundtable #CureCF #Final10Percent #CFWarriors

Looking for a meaningful way to make an impact in 2025? 🌟 Join us in making a difference in the lives of individuals with #cysticfibrosis who do not benefit from currently available therapies and urgently need a breakthrough! How can you get involved? The sky’s the limit, including: 🎂 Donate your birthday and inspire hope 🏅 Become an EE Champion to fuel therapeutic development 🎉 Host a fundraiser and rally your community 🏃♀️ Run with Team EE at the 2025 Broad Street Run or Philly Marathon 💜 Share your CF story to inspire change Every ounce of support gets us closer to creating lifesaving therapies for those who need them most. Together, we can create a future where EVERYONE with #CF can breathe easier. 🔗 Get involved: https://lnkd.in/eycmCkKM . . . #CureCF #Final10 #CFWarriors #MakeADifference #NewYearsResolution #GetInvolved #NewYear

To our unstoppable Entourage: This has been a transformational year for EE. From a gene therapy company launched by EE dosing the first person with CF in a clinical trial to EE-funded phages treating 34 people with drug-resistant infections, 2024 has been a year of impact. These advances are the dream we’ve worked tirelessly toward—and they’re happening all thanks to YOU. 💜 But we’re not only looking for advances; we’re looking for breakthroughs and cures! And so, our mission continues full steam ahead. With just four days left in 2024, we’re rallying to hit $250,000 by Emily’s 40th birthday on January 9, 2025. 💪 Every single donation gets us closer to lifesaving treatments for the final 10% of people with CF. Will you help us cross the finish line? MAKE A YEAR-END DONATION >>> https://bit.ly/3VOZ3gT

This holiday season, we’re celebrating the incredible power of our Emily’s Entourage community. 💜 Because of you—our donors, supporters, and champions—we’re driving urgently needed progress for the final 10% of the cystic fibrosis community still waiting for breakthroughs. Your unwavering support fuels our mission, turning hopes into realities and possibilities into tangible progress. 🌟 As we reflect on this season of gratitude, we thank YOU for being part of this journey. Together, we can create a future where 100% of people with #cysticfibrosis have a lifesaving therapy of their own. . . . #CureCF #CFWarriors #CF #CFAwareness #CFirl #EmilysEntourage

Big news in the CF world today! A once-daily next-in-class CFTR modulator, called Alyftrek, has been approved for roughly 90% of the CF population ages 6 and older. This is a next generation alternative to Trikafta, the revolutionary CFTR modulator that was approved for 90% of the CF community in 2019 and dramatically changed the face and trajectory of this disease for many people with the most common CF mutation as well as a handful of additional mutations. Some of the key differences between Alyftrek and Trikafta: •Alyftrek is only taken once per day, as opposed to Trikafta which is taken twice per day. •One of the three drug components of Alyftrek, known as a “corrector,” is different from Trikafta, which may offer benefits for folks unable to tolerate Trikafta. •Alyftrek showed a greater reduction in sweat chloride levels than Trikafta. •Alyftrek has been approved for 31 additional rare mutations that Trikafta is not currently approved to treat (see the list below). This represents a major advancement in the treatment of CF. More options is a great thing! We are overjoyed for those that will benefit from this new therapy and particularly ecstatic for those with the 31 new rare mutations for which this will be their first approved CFTR modulator therapy. Despite the excitement, it is important to note that this new therapy is *not* approved for the vast majority of people in the final 10%. Today, we celebrate this massive victory for the CF community! We are elated for the hope and opportunities this provides 90% of the CF population. AND at the same time, today, we DOUBLE DOWN in our commitment to extend the progress to the final 10%, fast. Because 90% is wonderful, but it isn’t good enough. Because the time is quickly ticking and CF rages on. And because, for the first time ever, there are various promising therapies in clinical trials for the final 10%. We are making extraordinary progress, but we’re not there yet. Help speed drug development for the final 10% in celebration of today’s huge news >>> https://lnkd.in/gzSWiq9q Press release: https://lnkd.in/e4ZnQNvt Additional rare mutations that have been approved for Alyftrek: 3195del6 G149R L1065P R516G 3199del6 G91R M1101R R560S A559T H199R P99L R560T A559V H609R Q1100P T604I A561E I1234Vdel6aa Q452P V520F A613T I1398S R1066C Y569C A72D I506T R1066L Y913C D513G L102R R1066M

Life with advanced stages of a fatal illness is heartbreaking and terrifying—but it also brings clarity. As the holidays approach, our co-founder Emily Kramer-Golinkoff reflects on what truly matters: love, relationships, and the gift of time. After 13 years of driving breakthroughs for those left behind by current mutation-targeted therapies, our mission remains clear: secure a future—and more holiday seasons—for everyone with #cysticfibrosis. Now through December 22, all donations will be matched dollar-for-dollar, unlocking $1 million for lifesaving #CF research. 💜 Donate today >>> https://lnkd.in/gzSWiq9q . . . #CureCF #Final10Percent #HopeInAction #DoubleImpact #CFResearch #CFWarriors #Research

From living room to leading a global movement 💪 What first started as a small gathering in EE co-founders Emily and Liza’s home has grown into a global force for those with #cysticfibrosis still waiting for lifesaving therapies. To date, we’ve: ✨ Raised more than $15 million dollars ✨ Funded 38 research grants with top researchers from around the world ✨ Secured $52.3M in follow-on funding to continue to speed CF drug development But we’re not stopping there—we’re working tirelessly to get game-changing therapies to those in the final 10% who are waiting with bated and fading breath for their breakthrough. 💜 Together, we’re not just imagining fast breakthroughs and cures—we’re making them happen. . . . #CFResearch #CureCF #CF #CFWarriors

Ready to change lives? 💜 Nick Dinges, Chair of EE’s Champions Program, is here to share how you can create a lasting impact for those with #cysticfibrosis who need it most. 💪✨ Fuel groundbreaking research, rally your community, and be the force behind lifesaving breakthroughs individuals with #CF left behind by current therapies. This is YOUR moment to turn compassion into action. Set your goal, gather your squad, and help drive critical progress for the CF community! 🌟 Sign up as a Champion or nominate someone today: https://lnkd.in/epGPpSav . . . #CureCF #EEChampions #MakeADifference #CFResearch #CFWarriors #CFirl #Volunteer

Hear what Emily’s Entourage is doing differently and the role it is playing in advancing lifesaving therapies for the final 10%. 💪💜 Now through December 22, every dollar donated will be matched dollar-for-dollar, doubling your impact and bringing us closer to fast breakthroughs and a cure for CF. MAKE A YEAR-END DONATION >>> https://lnkd.in/gzSWiq9q . . . #CysticFibrosis #CureCF #CF #CFWarriors