Living with Cystic Fibrosis

01/21/2026

Brought to you by my 26 year old son with CF. 💜

https://www.facebook.com/share/16mvzURetA/

01/21/2026

SUPPORT FOR THE SOAR ACT. The SOAR Act (Supplemental Oxygen Access Reform Act) was discussed by the House Energy & Commerce Health Subcommittee and remains active. CFRI joined multiple respiratory health patient advocacy organizations in co-signing a letter to committee members, seeking support for this bipartisan, vitally needed legislation.

Currently members of our community dependent upon supplemental oxygen who receive their medical care through Medicare (including many people under the age of 65) have extremely limited access to portable oxygen, impacting health and quality of life.

01/21/2026

01/21/2026

01/21/2026

📣 Our friends at the University of Illinois Chicago are seeking females with cystic fibrosis ages 40–65 who identify as perimenopausal or postmenopausal to participate in an important research study.

The study explores how menopause affects CF symptoms and quality of life through completing a baseline questionnaire and 3 surveys as well as a virtual interview via Zoom.

If this sounds like you, consider sharing your experience - your perspective can help improve understanding of an under-studied area of CF care!

👉🏽 Fill Out the Eligibility Questionnaire: https://www.redcap.ihrp.uic.edu/surveys/?s=L8XRFK3RYMLEHTPY

📧 Learn More contact the PI Sandy Sufian sufians@uic.edu, refer to STUDY2025-1028.

01/21/2026

https://www.facebook.com/share/p/1DgC4B8HdG/

💙📚 The Vertex Foundation Scholarship is OPEN 📚💙

We are so excited to share that our longtime friends and incredible supporters at The Vertex Foundation are now accepting applications for their 2026 scholarship program, created specifically for students impacted by cystic fibrosis.

This $5,000 scholarship is available to people living with CF as well as their immediate family members and caregivers, including spouses, siblings, and children, who are pursuing undergraduate or graduate education at a community college, university, or graduate school in the U.S. or Canada.

has shown up for the CF community in powerful, meaningful ways for years, and this scholarship is just one more example of their deep commitment to helping our community thrive both inside and outside the clinic. The program is administered by Scholarship America, ensuring a thoughtful and accessible application process.

🗓️ Applications are open now
⏰ Deadline: February 24, 2026 at 3:00 PM CT
💵 Award amount: $5,000
🔁 Awards are not renewable, but eligible students may reapply each year

If you or someone you love in the CF community is continuing their education, we highly encourage you to apply.

https://scholarshipamerica.org/scholarship/vertexfoundation/

12/09/2025

The holidays can be busy—your well-being matters too 💚
Join CFRI for our upcoming Mindfulness to Find Peace and Joy workshop, designed to support emotional wellness for those living with CF.

📅 Tuesday, Dec 9
⏰ 5 pm PT / 8 pm ET
✨ Led by Julie Desch, MD, mindfulness instructor and CF community member

Discover gentle practices to find calm, presence, and joy.

💜 Register: https://curecf.cfri.org/PeaceJoy

Sponsored by Viatris, Vertex Pharmaceuticals, Genentech, and private donors.

12/09/2025

The REsearch Study to Advance the CF THerapeutics Pipeline for People without Modulators (REACH) is a study that aims to advance new therapies for all people with cystic fibrosis who do not take CFTR modulators. Five adults with CF shared how their personal experiences motivated them to contribute to REACH and what this research means to them.

12/09/2025

The serious toll of caregiver burnout in CF families: https://bit.ly/4fnoMW7

12/09/2025

Through CF Peer Connect, Dakodah was matched with a mentor who understands his journey. When challenges come up or he needs someone who “gets it,” he has someone to turn to. Since then, he’s met others virtually and joined projects supporting the CF community. If you're seeking connection or support, CF Peer Connect mentors are here for you.