iiinova — where your digital self keeps evolving

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 02/10/2026

CFRI Workshop: Mindfulness to help cope with medical trauma in the CF community. Tues, Oct 6 @ 5pm PT/8pm ET, co-led by Dr. Julie Desch, Meg Dvorak LCSW & Deidre Hughes MA/MA. Short practice + Q&A. us02web.zoom.us/meeting/regi...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 28/09/2026

CFRI mourns the loss of beloved community member, Anna Modlin Holyoak, a beloved mother, daughter, wife, sister & friend, was a CF warrior & double lung transplant recipient. We hold Anna’s loving family in our healing thoughts; Terry, Zoe, Robin, Doug & Sara 💜 bare.com.au/tributes/185...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 28/09/2026

Weeks away. Seats filling. Join us at CFRI's A Breath of Fresh Air Gala to honor Jacquelyn Spano, DNP, RN of Stanford - Luxury auction, dinner & dancing, all for #CysticFibrosis research. 📅 Saturday October 17th @ 5:30-10:30pm📍 Hillsborough Racquet Club curecf.cfri.org/Gala2026

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 20/09/2026

What happens to everything a patient says that never makes it into their chart? Join ATS AI Lab for a free webinar: "When the Chart Doesn't Know the Patient: AI, Patient Voice, and the Digital Twin" — Tuesday, Sept. 23 at 6pm ET. Register: tinyurl.com/AIPatientRec...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 14/09/2026

Does your teen with CF want to connect with others who truly get it? CF Teen Connection free virtual group is back this Wed, Sep 16th @ 5:30PM PT. 👉 Register: Email Holly (hduplessis@cfri.org)

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 11/09/2026

Did you Know? 720K+ people die by suicide every year. #WorldSuicidePreventionDay reminds us these losses are preventable. For the CF community mental health is essential care & CFRI's Counseling Program can help www.cfri.org/education-su... Struggling? Call/text 988. You are not alone 💜

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 08/09/2026

Visítanos en Conocimiento y Conexión, la comunidad virtual en español de FQ de CFRI! Para adultos con #fibrosisquística y padres/personas que cuidan. miércoles, 9 de septiembre @ 5pm PT / 8pm ET⁠. PARA REGISTRARSE, enviar un correo electrónico a Hannah (hdolhai@cfri.org).⁠

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 01/09/2026

💜 Mothers of children & adults with #CysticFibrosis: Take a few hours for YOU. Join CFRI’s FREE virtual Embrace Retreat on Sept. 19, 2026 @ 9AM–1PM PT! Enjoy writing, mindfulness for better sleep, Pilates & connection with fellow CF moms. cfri.app.neoncrm.com/nx/portal/ev...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 01/09/2026

A Breath of Fresh Air- CFRI's Gala to Support Research, Education & Support Programs. Join us 10/17/26 @ Hillsborough Racquet Club to raise awareness, celebrate groundbreaking research & honor our 2026 CF Champion, Jacquelyn Spano, DNP, RN, of Stanford. curecf.cfri.org/Gala2026

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 28/08/2026

Preparing for Back-to-School Season with CF: 504 & IEP Podcast📚️Students with CF may require accommodations at their educational institutions to reach their full academic potential. Hannah & Rachel explain the difference between an IEP & 504 Plans. 👀 www.youtube.com/watch?v=bW1I...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 26/08/2026

CFRI's Virtual Support Group for Those Who Cannot use CFTR Modulators meets monthly, Next Meeting 8/27/26 @ 5PM PT. If modulator therapy is not an option for you this space was made with you in mind. You deserve community, support, and a place to be honest about that. curecf.cfri.org/SupGrpMod

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 22/08/2026

CFRI Workshop: Treating the Whole Person - Social Determinants of Health Care in CF Care. This session will delve into the ways that a person's non-medical conditions may impact health and wellbeing. 📅 Wednesday, September 2 @ 12pm PT 👉🏽 Register: us02web.zoom.us/meeting/regi...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 19/08/2026

📣 Calling on Artisans for CFRI's Holiday Makers Market- Adult w/ #CysticFibrosis or immediate family members who creates & sells handcrafted products, consider applying to showcase your talents. Applications close AUG 31 @ 5pm PT! Learn More /Apply: www.surveymonkey.com/r/G7XPRQF

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 15/08/2026

Join us at CFRI'S A BREATH OF FRESH AIR GALA, 10.26.26 @ 5:30–10:30 pm at Hillsborough Racquet Club to Support #CysticFibrosis Research, Education & Support Programs! Help us honor our 2026 CF Champion, Jacquelyn Zirbes Spano, DNP, RN, Stanford. curecf.cfri.org/Gala2026

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 12/08/2026

🎙️ New Podcast: Designated a Liability: Cruising with CF. Ella Balasa, an adult with CF, shares what happened when a cruise doctor unfamiliar with CF barred her from continuing her Caribbean vacation after she sought care while feeling unwell. ⁠👀youtube.com/watch?v=KJX6nErnIxY&feature=youtu.be

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 07/08/2026

CFRI's #CysticFibrosis Adult Virtual Summer Retreat starts TOMORROW (Aug 7-9th) — Are You In? Three days of learning, laughing, creating, moving & connecting with a community that truly gets it. Did we mention it's completely FREE? Register NOW: cfri.app.neoncrm.com/np/clients/c...;

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 02/08/2026

The wave has passed — but the impact? That's forever. 🌊 CFRI's 39th National #CysticFibrosis Education Conference brought together 450+ attendees from 43 states and 19 countries last weekend — and we are still smiling about it. Recording releases coming soon. Stay tuned!

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 23/07/2026

Tomorrow We Gather. Will You Be There? Register NOW to experience powerful speakers, expert-led panels, CFRI-funded research presentations, and so much more! July 24–26 | FREE to Register | In-Person scholarships available: Email SBreon@cfri.org cfri.app.neoncrm.com/np/clients/c...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 23/07/2026

Could this be YOUR conference moment? It's not too late to experience it for yourself! FREE virtual registration & In-person scholarships still available! (Email Sabine: SBreon@cfri.org) Register NOW: cfri.app.neoncrm.com/np/clients/c...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 22/07/2026

☀️ No sunscreen required. No travel stress. Just good vibes & great company. CFRI's Virtual #CysticFibrosis Summer Retreat is almost here and honestly? It might be the best summer plans you've made all year. 😎 📅 August 7–9 | FREE & Virtual cfri.app.neoncrm.com/np/clients/c...;

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 21/07/2026

💜 Meet This Year's CF Community Heroes! Their dedication, compassion, and tireless commitment to the CF community inspire everything we do. 📅July 24–26 FREE to attend Virtually & In-PersonScholarships available: email Sabine sbreon@cfri.org 👉Register: www.cfri.org/education-su...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 15/07/2026

Hey CF Teens -CFRI's CF Teen Connection is your space to meet other teens who get it, explore topics that actually matter to you & just... hang out. No pressure. No judgment. WED July 16 @ 5:30pm PT Special guest: Jaelyn Cooper, young adult w/CF Signup 📧 Sabine @ sbreon@cfri.org

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 13/07/2026

2 existing drugs. 1 unexpected discovery. A Stanford-led study found that combining 2 FDA-approved medications improved mucus clearance in CF animal models to 80% of healthy levels and could help those who don't benefit from CFTR modulators. CFRI-funded research at work. www.jci.org/articles/vie...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 12/07/2026

Register Now for the 42nd Annual #CysticFibrosis Benefit Golf Tournament 📍Cinnabar Hills Golf Club, San Jose, CA 📅 Monday, Aug 17, 2026 Star One Credit Union is the generous Title Sponsor supportting the search for a CF cure. More info Email Scott Hoyt @ dscott.hoyt@gmail.com.

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 12/07/2026

☀️ Soak Up July With CFRI's FREE Wellness Classes! This summer, take care of yourself the way you deserve. #CysticFibrosis July 11 - Mat Pilates July 18 - Flexibility & Mobility curecf.cfri.org/Wellness26 Sponsored by Viatris, Vertex Pharmaceuticals & private donors.

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 09/07/2026

⏰ LAST CHANCE-Hotel Discount Ends TODAY! Then secure your spot at CFRI's 39th National #cysticfibrosis Education Conference July 24–26 in Mountain View, CA! Virtual attendance is FREE & Limited scholarships available for in-person. Email us to inquire! www.cfri.org/education-su...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 08/07/2026

Visítanos en Conocimiento y Conexión, la comunidad virtual en español de FQ de CFRI! Para adultos con #fibrosisquística y padres/personas que cuidan. miércoles, 8 de julio @ 5pm PT / 8pm ET⁠. PARA REGISTRARSE, enviar un correo electrónico a Hannah (hdolhai@cfri.org).⁠

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 04/07/2026

🚨 CA residents: Insurers can use your genetic data to deny or limit life & disability insurance. AB 1798 would change that. Take action TODAY 👉 ujoin.co/campaigns/45...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 23/06/2026

💜 If modulator therapy is not an option for you — this space was made with you in mind. CFRI's Virtual Support Group meets monthly every 4th Thurs facilitated by Sonya Haggett, LCSW, a social worker who also lives with #cysticfibrosis. June 25th @ 5pm PT curecf.cfri.org/SupGrpMod

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 20/06/2026

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

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 18/06/2026

Come for the science. Stay for the community. Leave inspired. 💜 CFRI's 39th National #CysticFibrosis Education Conference. July 24–26 | Mountain View, CA + FREE Virtually. Register: www.cfri.org/education-su...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 17/06/2026

CF teens — when's the last time you vibed with someone who actually gets it? CF Teen Connection is THIS Wednesday, June 17 at 5:30 PM PT. Share your Top 5 faves & connect with teens who understand the CF life. Free. Virtual. Low-key fun. 👉 Register: Email Sabine (sbrants@cfri.org)

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 14/06/2026

You have until July 3rd to push back on a lung transplant policy change that will leave more patients behind on the waitlist. If you're short, type O, have high antibodies, or live on the West Coast this affects you. Take action: www.lungtransplantfoundation.org/act. www.youtube.com/watch?v=zXsF...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 09/06/2026

Last chance to sign up for CFRI's workshop: Can mindfulness help you sleep? You'll discover how to work with the storytelling mind that keeps you awake rather than fighting it, and gain practical mindfulness tools. Tuesday, June 9 @ 5pm PT Register Now: us02web.zoom.us/meeting/regi...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 09/06/2026

CA's proposed Medi-Cal asset limit: $13K → $2K. This change puts 62K seniors & people with disabilities at risk of losing coverage within 2 years. The Senate rejected it. The Assembly passed it. Your rep needs to hear from you NOW. ujoin.co/campaigns/45...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 04/06/2026

⏳ Deadline extended to June 15th. The Patrick Nash Fellows Training Program develops the next generation of adult CF clinicians — and CFRI covers travel, hotel & meals for the symposium. Apply: www.cfri.org/research/fel... Tag someone who should know about this 👇

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 03/06/2026

Happy Pride Month 🌈💜 This June we celebrate the beautiful diversity of the CF community including every LGBTQ+ patient, caregiver, family member, provider & advocate who makes this community what it is. At CFRI everyone is welcome. Everyone belongs💜🌈

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 03/06/2026

CFRI WORKSHOP: Alternative & Complementary Therapies in CF Care: Addressing Stigma & Improving Relationships. THUS 6/11@12pm PT We'll discuss ways that a patient's cultural background influences their preferences & relationship to care provided in the US. us02web.zoom.us/meeting/regi...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 27/05/2026

If modulator therapy is not an option for you — this space was made with you in mind. CFRI's Virtual Support Group for Those Who Cannot Benefit from CFTR Modulators meets monthly — facilitated by Sonya Haggett, LCSW. #cysticfibrosis. May 28th / 5pm PT / curecf.cfri.org/SupGrpMod

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 22/05/2026

Huge congratulations to Dr. Deepika Polineni and Dr. Raksha Jain on receiving prestigious awards from the ATS Public Advisory Roundtable! 🎉 Two extraordinary clinician scientists advancing CF research and patient care — and valued members of the CFRI family. We are so proud! 💜 #CysticFibrosis

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 15/05/2026

What happens when a country faces one of the highest #cysticfibrosis rates in Latin America? Dr. Ezequiel Baran, Buenos Aires, discusses CF care in Argentina, the challenges patients face, and the future he hopes to build for the CF community. youtube.com/watch?v=ry8pRlKHZOc&feature=youtu.be

youtube.com

Cystic Fibrosis Care in Argentina — Ezequiel Baran, MD

YouTube video by Cystic Fibrosis Research Institute

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 13/05/2026

Rev up your engines & your support for CF! Grab discounted tickets to the #NASCAR Cup Series at Sonoma Raceway on Sunday, June 28 @ 5PM PT - a portion of every ticket purchased goes directly to CFRI and the programs supporting the CF community.🎟️ www.gofevo.com/event/CFRI2026

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 13/05/2026

Happy #InternationalNursesDay 💜 Today we celebrate the people who show up for the CF community in some of its hardest moments. CF care takes a village and nurses are at the heart of it. Today we celebrate every single one of them!!

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 12/05/2026

Visítanos en Conocimiento y Conexión, la comunidad virtual en español de FQ de CFRI! Para adultos con #fibrosisquística y padres/personas que cuidan. miércoles, ⁠13 de mayo @ 5pm PT / 8pm ET⁠. PARA REGISTRARSE, enviar un correo electrónico a Hannah (hdolhai@cfri.org).⁠

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 30/04/2026

🌸 Come move with us - Join CFRI's FREE Wellness Classes for the #cysticfibrosis community! Our classes are designed to meet you exactly where you are. Saturday 5/2 9am PT - Slow Flow Yoga & 5/16 9am PT - 3D Strength. Sign Up: www.cfri.org/education-su...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 30/04/2026

Two-part trial of SION-719 completes enrollment. Sionna Therapeutics has launched a proof-of-concept clinical trial for its therapy as an add-on treatment to Trikafta, targeting the NBD1 region of the CFTR protein with aim of increasing protein activity. www.globenewswire.com/news-release...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 22/04/2026

Tomorrow! 📣 Join our friends @BDCCalifornia for "Denials, Delays and Discouragement?" — a free patient panel webinar on navigating healthcare access challenges. Real stories. Real solutions. Spanish translation available. 📅 April 22 | 6:30 PM 👉 Register forms.gle/W1H13yXa9mtq...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 21/04/2026

If CFTR modulators aren’t part of your treatment path, you’re not alone & you’re not without community. Join our monthly support group for real connection, shared stories & support that understands. Thurs April 23rd @ 5PM PT. #CysticFibrosis Register: curecf.cfri.org/NonModSuppor...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 21/04/2026

Happy #NationalVolunteerRecognitionDay to the extraordinary people who make CFRI's mission come to life! Our volunteers & committee members bring so much heart, dedication & joy to everything they do - We are so honored to have you in our corner. Thank you! 🌟💜

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 09/04/2026

April Wellness Classes for the CF community! They are designed to meet you exactly where you are. No experience needed, no pressure, just movement, breath & a supportive community. Sign Up: curecf.cfri.org/Wellness26

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