Cystic Fibrosis Research Institute

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...

YouTube video by Cystic Fibrosis Research Institute CF & Hearing Loss: One Woman's Journey

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 HDolhai@cfri.org.

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...

Summer can be full of sunshine—and still, support is essential. 🌻
CFRI’s Monthly Support Groups are here to help you stay grounded and connected, wherever you are on your CF journey. #cysticfibrosis

✨ Find your group. Find your people.

📝 Sign up: www.cfri.org/education-su...

Visítanos en Conocimiento y Conexión, la comunidad virtual en español de FQ de CFRI! Para adultos con fibrosis quística y padres / personas que cuidan. 9 de julio @ 5pm PT. Tema de la reunión: Fibrosis Quistica y el sueno. PARA REGISTRARSE, enviar un correo electrónico a Sabine (sbreon@cfri.org)⁠.

CF Education Conference Speaker Spotlight🎙️ ⁠Steven Freedman, MD, PhD (Beth Israel Deaconess Medical Center/Harvard Medical School) is Presenting on Cancer & CF. Feng Yuan, PhD (University of Alabama Birmingham), Presents on Ionocyte Subtypes.

Register: www.cfri.org/education-su...

Living w/CF means repeated hospitalizations, painful procedures, & uncertainty which can lead to PTSD. This #PTSDAwarenessDay, let's break the silence & Hold space for one another. CFRI’S Counseling Program offers financial support for therapy sessions www.cfri.org/education-su...

Have you Heard? CFRI’s CF Summer Retreat Registration is OPEN! Join Us IN PERSON & VIRTUAL 8/14 - 8/19. Enhance social support for adults w/ #CysticFibrosis! Educational presentations, exercise, arts & crafts, support groups, and much more! Register: cfri.app.neoncrm.com/np/clients/c...

SAVE THE DATE: CFRI's A Breath of Fresh Air Gala ✨️⁠ Saturday, Oct 11, 2025 @ the Hillsborough Racquet Club. Enjoy gourmet fare, local wines and a luxurious auction. We’ll honor our 2025 CF Champion, Dr. John Mark. Don’t miss this golden celebration! More info coming soon!⁠

A recent study highlights how stabilizing a region of the CFTR protein—called nucleotide-binding domain 1 (NBD1)—could improve treatment for people with #cysticfibrosis who don’t respond to current modulator therapies.

Read More: cysticfibrosisnewstoday.com/news/drugs-s...

Today we honor #Juneteenth — a powerful reminder of resilience, freedom & the continued fight for racial justice & health equity. Black families are still facing inequities in the medical system, including in CF care & research. We commit to keep fighting for true equality!

CF Education Conference Speaker Spotlight🎙️ ⁠Meghan McGarry, MD, MAS, (University of Washington & Seattle Children’s Hospital) Presenting on Inequities in CF Care. Celeste Riepe, PhD, (Stanford) Presents updates on her CFRI Funded Research. #cysticfibrosis

Register: www.cfri.org/education-su...

New Podcast: Managing CF & Incontinence. Despite the higher rates of incontinence among people with CF, stigma and embarrassment keep many people from seeking treatment.

Watch on YouTube: www.youtube.com/watch?v=5N3H...
👉🏽 Watch on Podbean: cfri.podbean.com/e/incontinen...

Dads: the superheroes in cargo shorts, the snack providers, bad joke champions & fierce protectors - Happy Father’s Day! To all the dads on the CF journey- whether you're managing treatments, offering pep talks, or just showing up with unconditional love, we see you & thank you!