Author | Lightnews

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 2d

📣 We want to hear from YOU! Your input helps us guide how CFRI develops programs, resources & advocacy efforts that best serve those impacted by #cysticfibrosis.

This survey takes only 15 minutes, but the insights you share are invaluable to us 💬 www.surveymonkey.com/r/H9NTKX5

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 3d

Check Out a New Podcast for #IPVawarenessMonth: Intimate Partner Violence & CF. In a 2023 study 33% of women w/CF reported experiencing IPV in their lifetime. Learn about the impact of chronic illness on romantic relationships & how to access support. youtube.com/watch?v=e5N0gmsGywQ&feature=youtu.be

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 4d

Our friends @ University of Rochester School of Medicine is conducting a survey. Eligibility: Primary Caregiver for a child 2-17yrs & has received a positive genetic test. Lives in US & Speaks English. Info: [email protected]
universityrochester.co1.qualtrics.com/jfe/form/SV_...

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 5d

4D-710 Advancing to Phase 2 Trials. 4DMT has received a new investment from the CFF to support the development of the company’s inhaled gene therapy for #cysticfibrosis. Phase 2 of the trial is currently recruiting participants at sites across the U.S.

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

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 7d

👀 Check out these new CFRI podcast recordings from the CF Adult Summer Retreat! Each session dives into critical topics impacting the #cysticfibrosis community.
curecf.cfri.org/ResistantInf...
curecf.cfri.org/GutMicrobiome
curecf.cfri.org/Bacteriophages
curecf.cfri.org/Vaccines

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 8d

New Blog Post: Inside the walls of a 2-week "Vacation". In 2024, people with #CysticFibrosis were hospitalized over 10K times. Daelyn James, reflects on her hospitalizations & how she learned to turn them into opportunities for personal growth. www.cfri.org/inside-the-w...

Inside the Walls of a Two-Week “Vacation”

CFRI's mission is to be a global resource for the cystic fibrosis community while pursuing a cure through research, education, advocacy, and support. Our vision is to find a cure for cystic fibrosis w...

www.cfri.org

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 8d

CFRI Workshop: Enhancing Research Recruitment Among Diverse Populations. This session will explore strategies that #cysticfibrosis centers can use to build trust within communities and address barriers to recruitment and retention in clinical trials.

Nov 12th @ 12pm PT
curecf.cfri.org/Workshop

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 15d

Our friends @ Seattle Children’s Hospital are inviting CF community members to join the Health Equity Advisory Team (HEAT) for a CFF supported study called DataEQ.
Inquire by FRI 10/17/25! Learn more: www.surveymonkey.com/r/8TBY8HN?Co...

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 15d

💜 Our Hearts Are Overflowing with Gratitude! Because of your generosity, we surpassed our fundraising goal to support CFRI’s vital research & support programs for those living with #cysticfibrosis. We are deeply grateful to our sponsors & to every donor, guest & volunteer ✨️

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 16d

Big win for California! 🎉
@governor.ca.gov Newsom has signed #SB41 — bringing transparency, fairness & accountability to prescription drug pricing. 💊 This landmark law will help lower costs & protect patients.
💜 Thank you Governor Newsom, Scott Wiener & all advocates!

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 20d

✨ Last Chance to Join Us! ✨
CFRI’s Breath of Fresh Air Gala is almost here — and this is your final opportunity to be part of this unforgettable celebration of hope, community, and 50 years of impact. 💜
Can’t attend? Explore our virtual auction from anywhere! curecf.cfri.org/Gala2025

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 26d

⁠Visítanos en Conocimiento y Conexión, la comunidad virtual en español de FQ de CFRI! Para adultos con #fibrosisquística y padres / personas que cuidan. 8 de octubre @ 5pm PT . PARA REGISTRARSE, enviar un correo electrónico a Hannah ([email protected])⁠.

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 27d

You don’t have to carry it all. CFRI’s Support Groups meet every month to offer connection, validation, and community for those affected by CF. 🧡 Find your group & join the conversation → www.cfri.org/education-su...

Thank you to Viatris & private donors for sponsoring our 2025 support groups!

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 27d

🍂 This October, make time for YOU. CFRI’s free virtual #wellnessclasses bring movement and mindfulness to your home. For the CF community and their families. No pressure, no experience needed. Register: www.cfri.org/wellness-cla...

Support from Viatris, Vertex Pharmaceuticals & private donors.

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 28d

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

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · 28d

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

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Cystic Fibrosis Research Institute @cfricurecf.bsky.social · Sep 30

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...

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · Sep 29

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

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · Sep 28

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...

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · Sep 26

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...

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · Sep 23

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

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · Sep 22

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...

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · Sep 20

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...

Cystic Fibrosis, Body Image & Eating Disorders

YouTube video by Cystic Fibrosis Research Institute

youtube.com

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · Sep 18

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

Cystic Fibrosis Research Institute @cfricurecf.bsky.social · Sep 12

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