Virtual Auction - OPENS Friday 10/3 @ 3pm PT! Can't attend our #aBreathofFreshAirGala but still want to support CFRI & our programs? ⁠Check out our virtual auction, theres something for everyone: jewelry, wine tastings, sporting events, getaways, adventures & more! cfri.tiny.us/CFRIAuction2025

Our friends at READyCF are recruiting males with #cysticfibrosis & their partners to complete an interview about their experience deciding whether or not to pursue assisted reproductive technology (ART) in order to build a family. Interest form: redcap.link/READyCF

Meet Our CFRI-Funded Researchers 🔬 Our investment in new ideas enables researchers at well-established academic & medical institutions to bring new perspectives to the study of #cysticfibrosis. Thanks to our community, we are proud to now fund 10 CF research projects! www.cfri.org/research/res...

The countdown is on ✨️ CFRI’s A Breath of Fresh Air Gala is just two weeks away, and we are thrilled to announce that the incredibly talented Tess Dunn, who lives with #CysticFibrosis, will be performing. 🎶 📆 October 11, 2025 | Hillsborough Racquet Club 🎟️ Tickets & tables: curecf.cfri.org/Gala2025

The Clinical Psychosocial & Economic Burden of #cysticfibrosis Lung Disease in the Era of CFTR Modulator Therapy. While modulator therapies have led to significant improvements in symptoms, lung function & quality of life, a substantial burden remains. Read More: www.atsjournals.org/doi/abs/10.1...

In very encouraging news, the Ways & Means Committee advanced the bipartisan Medicare MCED Screening Coverage Act, H.R. 842/S. 339 with a unanimous 43-0 vote. Many people with CF receive healthcare through Medicare. Email to your representatives: ujoin.co/campaigns/37...

Our friends @ HOPeCF is recruiting for a study that examines the impact of parenthood on people with #cysticfibrosis. Participants will complete online surveys for 5 years which examine physical & mental health, stress & sleep. Paid Participation! redcap.link/hope2

Call for Letters of Intent: CFRI Research Awards interested #cysticfibrosis researchers - We seek to invest in high quality scientific research that will broaden treatment options, improve quality of life & expand the search for a cure. LOIs Due 11/3/25. www.cfri.org/research/fun...

How does CF change the way you see yourself in the mirror? Join us for an important conversation about CF, body image &finding support. #PatientVoice 💜 Funding for CF Community Voices 2025 has been provided by Viatris & Vertex Pharmaceuticals. 👀 youtube.com/watch?v=D1Gh...

Huge thanks to @letsroam for supporting CFRI’s Breath of Fresh Air Gala with scavenger hunt tickets! This in-kind donation will help us raise funds for vital CF research & programs that connect our community. Nonprofits discover #letsroam donations: www.letsroam.com/donations

CA ACTION ALERT: SB 41. This bill has passed the Legislature. Email Gov Newsom to ensure this bill becomes law. 1. Copy & Paste letter: curecf.cfri.org/SB41Letter 2. Email: [email protected] / subject: Requesting a signature for SB 41 3. Attach only the PDF letter Deadline: EOD MON 9/15

Join us at CFRI’s A Breath of Fresh Air Gala SAT 10/11/25 to honor Dr. John Mark, Stanford - 2025 CF Champion. For decades, Dr. Mark has transformed #CysticFibrosis care through integrative medicine & mind-body practices to improve lives. 🎟️https://events.handbid.com/lp/cfris-2025-breath-of-fresh-air

🌿 Move, stretch & recharge this September! CFRI’s free Wellness Classes are designed for the #cysticfibrosis community. No experience needed. All abilities welcome! Register www.cfri.org/wellness-cla... Sponsored by Viatris, Vertex Pharmaceuticals & private donors.

📣 This is the moment. The #MCED Act is the most popular health care bill in both chambers – backed by Democrats & Republicans, doctors & patients alike. Cancer won’t wait. Neither should Congress. @SpeakerJohnson @SteveScalise @RepJeffries @LeaderJohnThune @SenSchumer

⁠Visítanos en Conocimiento y Conexión, la comunidad virtual en español de FQ de CFRI! Para adultos con #fibrosisquística y padres / personas que cuidan. 10 de septiembre @ 5pm PT . PARA REGISTRARSE, enviar un correo electrónico a Sabine ([email protected])⁠.

Calling all moms of kids and adults with #cysticfibrosis —CFRI’s Virtual Embrace Retreat is just ONE WEEK AWAY! SAT, Sept 13th@ 9am PT. Reconnect, recharge & share with a community of incredible moms. cfri.app.neoncrm.com/np/clients/c... Sponsored by Vertex Pharmaceuticals & AbbVie

Mindfulness to Cope with Depression Workshop! Tuesday, Sept 23 @ 5pm PT. We will explore useful practices to help manage depression & sadness related to #cysticfibrosis. Led by Julie Desch, MD, certified mindfulness instructor. Register: us02web.zoom.us/meeting/regi...

Back to routines doesn’t mean back to carrying it all alone. 🍂 CFRI’s Monthly Support Groups are a place to pause, reflect & connect with others who get it. #cysticfibrosis www.cfri.org/education-su... Thank you to Viatris & private donors for sponsoring our 2025 support groups!

📣 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. www.globenewswire.com/news-release...

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!

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. 💜

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. www.atsjournals.org/doi/abs/10.1...

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! www.cfri.org/cystic-fibro...

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: cfri.app.neoncrm.com/np/clients/c...

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: us02web.zoom.us/meeting/regi...

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: events.handbid.com/lp/cfris-202...

🚨 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: cfri.app.neoncrm.com/np/clients/c...;

New Blog Post: Back-to-school time brings excitement, but when you’re 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: www.cfri.org/navigating-b...

✨ 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 :https://www.cfri.org/wellness-classes/

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 ([email protected])⁠⁠

⛳ Less Than 2 Weeks Away! Join us @ 41st Annual CF Benefit #Golf Tournament Monday, Aug 18 @ Cinnabar Hills Golf Club San Jose, CA! Enjoy a championship course, stunning views & a great cause. Huge thanks to Star One Credit Union, our generous Title Sponsor! More Info: www.cfri.org/wp-content/u...

It’s #WorldNTMAwarenessDay! NTM impacts 10% of those w/ CF—resistant to many treatments & on the rise. 🎧 New podcast w/ Amy Leitman, JD of @NTMir. 👀 Watch now: YouTube: www.youtube.com/watch?v=5Cga... PodBean: cfri.podbean.com/e/ntm-video/

It's #NationalMinorityDonorAwarenessDay — did you know?Communities of color face longer transplant waits, lower donor match rates & worse outcomes. They’re also underrepresented as organ donors. This costs lives. Register as an organ donor: registerme.org

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! IN PERSON? Get your Sputum Culture by Aug 2nd. More Info: www.cfri.org/education-su...

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💜

Supplemental Oxygen Access Reform: Support Oxygen Access for Medicare Recipients, including people with CF. The current system provides patients w/oxygen systems that often leave them homebound, though more effective technologies are available. Sign Today: ujoin.co/campaigns/39...

NEW Podcast – CF & Hearing Loss: One Woman's Journey! Samantha Marino, a young adult living with CF, shares her personal journey following a diagnosis of MAC. She reflects on how the intense long-term antibiotic treatment led to hearing loss. www.youtube.com/watch?v=F7Qk...

Planned Pregnancies After Lung Transplant Tied to Better Health Outcomes! According to a US study, planned pregnancies after a lung transplant resulted in better outcomes than those that were unplanned. Read More: journal.chestnet.org/article/S001...

Blog Post: Julie Desch, MD Invites you to CFRI’S Conference. “The warm welcome, the introductions & of course, the researchers who gave inspiring presentations full of intriguing science & a healthy dash of hope were all exactly what I needed at the time" www.cfri.org/come-to-our-...

We are creating a podcast episode about #CysticFibrosis, Body Image & Disordered Eating. If you live with CF & would be open to sharing your story in a safe and respectful space, we’d love to hear from you. If you're interested, please email Hannah Dolhai [email protected].

Global Voices, Life-Changing Research. Join the inaugural Global Voices in Patient-Centered Research webinar—spotlighting CF & how research transforms lives. Hear directly from people with CF, clinicians & global leaders. July 25 | 9AM CST | Register: forms.feinberg.northwestern.edu/view.php?id=...

No funding for CA RDAC. The bill’s sponsor, ASM Zbur, was informed this week that funding for the RDAC was not included in the state budget. We encourage CA Org's & Patients to join the Rare Disease Access Coalition. #PatientAdvocacy www.bdcouncilca.org/rare-disease...

A night to remember. A community to celebrate 🎉 Join us SAT 7/26 @ 6 PM PT for CFRI’s Conference Awards Celebration, as we honor individuals whose dedication, compassion & legacy have shaped the #cysticfibrosis community. Sign up: cfri.app.neoncrm.com/np/clients/c...

Culture check, please! 🧫 If you’re joining us In-Person for CFRI’s #CysticFibrosis Adult Retreat, Aug 14–19 - you’ll need to get a Sputum / Sinus / Throat Culture done between Jul 9 - Aug 2 to get the final report by 8/12/25. Register Today: cfri.app.neoncrm.com/np/clients/c...

What do you get when you combine cutting-edge science, unforgettable social events, and a passionate #cysticfibrosis community? CFRI’s 38th National CF Education Conference—just a few weeks away! BTW, Hotel discount ENDS July 15th...Book today!! www.cfri.org/education-su...

Don't Miss this Webinar Emily's Entourage is hosting: Gene Therapy Updates in CF Tue, 7/15 @ 8pm ET/5pm PT. Featuring Drs. Jennifer Taylor-Cousar, Patrick Harrison & Paul McCray. Attendance is FREE but registration is required. #cysticfibrosis www.emilysentourage.org/post-symposi...

🏌️‍♂️Join us for the 41st Annual CF Benefit Golf Tournament at Cinnabar Hills Golf Club San Jose, 8/18/25. Enjoy a spectacular day of golf while supporting the fight against #CysticFibrosis. Huge thanks to our Title Sponsor, Star One Credit Union! ⛳ www.cfri.org/ways-to-give...

We're only a couple weeks away - If you haven't registered yet, now is the time! Expect impactful sessions, meaningful conversations & inspiration that can only come from being surrounded by others who understand the CF journey firsthand. 👉 Register Today: www.cfri.org/education-su...

We are so thrilled to announce the new members joining CFRI’s Board of Directors! Please join us in welcoming Rohini McKee, Rebecca Muller, PhD, Elizabeth Burgener, MD & Art Brace, PhD to the Board! Learn more: https: www.cfri.org/about-us/boa...

🚨 URGENT: Medicaid is on the line! The Senate just approved a version of the H.R.1 with deeper cuts to Medicaid & SNAP—the House will vote on it today. 42% of people w/CF rely on Medicaid for healthcare. Over 1/2 are children. 📣 Take action NOW: ujoin.co/campaigns/38...