Cystic Fibrosis Research Institute
@CFRI_CureCF
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CFRI funds research, provides educational resources and community support, and spreads #cysticfibrosis awareness. #curecf. For more info, visit https://t.co/H2fMOwqQ8c.
Palo Alto, CA
Joined July 2010
📣 Clinical Trial Launched for Sionna's Experimental Treatment for #cysticfibrosis. Designed to stabilize the nucleotide-binding domain 1 (NBD1), which is not targeted by any approved CFTR modulator.
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Huge thanks to everyone who joined the 41st Annual CFRI Benefit Golf Tournament at Cinnabar Golf Club! Together we raised nearly $70,000 for #CysticFibrosis research, education & support programs. Over 41 years, this event has raised $3.5M - incredible legacy of hope & impact!
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On #WomensEqualityDay, we celebrate progress.& confront the truth: Women are half the population but not half the data. Women are underrepresented in medical studies & in CF that means higher mortality & worse health outcomes. We push for true equality in science & care. 💜
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A team of US researchers used a novel transgenic #cysticfibrosis ferret model to investigate the mechanisms of ion & fluid transport by pulmonary ionocytes & their regeneration. This research was funded in part by CFRI to lead investigator Feng Yuan, PhD.
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NEW CFRI RESOURCE: Self-Advocacy Toolkit! Designed to empower individuals w/#cysticfibrosis to advocate in the clinic setting & beyond. It contains useful tips & info regarding patient rights, clinic visit preparedness, insurance issues & more!
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Registrations OPEN - Virtual Embrace Retreat for Mother's of Children & Adults with CF! SAT, 9/13/25, 9am-12:30pm PT. Informative & fun activities will be packed into this shorter retreat; come reconnect w/ your fellow CF mothers! .More Info & Register:
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Workshop: Mindfulness to Cope with Depression. Tues 9/23 @ 5pm PT. We will explore mindfulness practices to help manage depression & sadness related to #cysticfibrosis. Led by Julie Desch, MD. Register Today:
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A BREATH OF FRESH AIR - CFRI's GALA TO SUPPORT OUR RESEARCH, EDUCATION & SUPPORT PROGRAMS!.Saturday, October 11 @ 5:30 – 10:30 pm,.Hillsborough Racquet Club in Hillsborough, CA.Individual tickets are $150 per person. Buy your tickets:
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The NIH is hosting a virtual workshop “Lung as the Gateway for Environmental Exposures in Pulmonary & Cardiovascular Disease”, Oct 14th & Oct 15th 10am - 4pm (ET). Register for Free :
nhlbi.nih.gov
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🚨 LAST CALL 🚨 CFRI's #CFAdultRetreat begins tomorrow! From Phage Therapy, Gut Microbiome & CF to interactive magic show, Qi Gong, support groups it’s a full weekend of learning, connection & fun. Join us virtually!.Register: https://cfri.app.neoncrm.com/np/clients/cfri/event.jsp?event=196&
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New Blog Post: Back-to-school time brings excitement, but if living with CF, it can also bring anxiety. Hannah Pfeiffer, a special ED teacher with CF, shares how she worked to balance a “normal” school experience while protecting her health. Read More:
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✨ Move. Breathe. Connect. CFRI’s free #wellnessclasses are here for the CF community! . August Schedule:. Sat, Aug 9 – Mat Pilates . Thurs, Aug 14 – Flexibility/Mobility . Sat, Aug 23 – Slow Flow Yoga . Thurs, Aug 28 – U-Jam . Register :
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Visítanos en Conocimiento y Conexión, la comunidad virtual en español de FQ de CFRI! Para adultos con fibrosis quística y padres / personas que cuidan. 13 de agosto @ 5pm PT . PARA REGISTRARSE, enviar un correo electrónico a Hannah (hdolhai@cfri.org)
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Less Than 2 Weeks Away! Join us @ 41st Annual CF Benefit #Golf Tournament Aug 18 @ Cinnabar Hills Golf Club, San Jose! Enjoy a championship course, stunning views & a great cause. Huge thanks to Star One Credit Union, our generous Title Sponsor! More Info:
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It’s #WorldNTMAwarenessDay! NTM impacts 10% of those w/ CF—resistant to many treatments & on the rise. 🎧 New podcast w/ Amy Leitman, JD of @NTMinfo . 👀 Watch now: .YouTube: PodBean:
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Friendships make the journey lighter—especially in the CF community. On #NationalFriendshipDay, tag a friend who’s helped you through, made you laugh, or reminded you you’re not alone. Looking to reconnect or make new friends? Join the #CFAdultRetreat
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Community is a powerful form of care 🫶🏽 CFRI's Support Groups meet monthly and are here for you. All groups are safe, supportive spaces for everyone impacted by CF. Find your space, your pace, your support. ➡️ Sign up Now:
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🫁 Over 60% of people waiting for an organ transplant are from communities of color—yet donation rates remain low due to systemic barriers. Add CF to the mix? The disparities are even deeper. 💚 Representation saves lives. ✍️ Register as an organ donor:
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Sneak Peek Time! We’re thrilled to reveal this year’s #CysticFibrosis Adult Retreat theme; The Ancient Order of the 65th Rose 🌹 Aug 14–19th. Virtual attendance is FREE / In-person SCHOLARSHIPS available! . Get your Sputum Culture by Aug 2nd. More Info:
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A Phenomenal Weekend @ CFRI’S Conference🎉 Our thanks to everyone who participated & played a role in its success. Stay tuned as we release the recordings on our YouTube & Podbean channels. Generously sponsored by Vertex, AbbVie, ReCode, Viatris & the Boomer Esiason Foundation💜
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