Community Voice: Monthly Update
July 2026 Edition
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Dear Community Voice Member,
Welcome to the July 2026 edition of the Monthly Updates!
In these digests, we share the impact Community Voice members are making through participation in recent opportunities. In this month’s edition, we’re sharing more about
- New members of the SPeCTRuM and CEDaR Community Advisory Councils
- Initial results from the Digestive System Care Needs Survey
- An update the on CF Patient Registry
- Upcoming events: CF Circle and Webinar
If you would like to read about past projects, browse previous editions.
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Two CFRD-Focused Committees Welcome New Community Members
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This spring, two committees supporting research on cystic fibrosis-related diabetes (CFRD) welcomed new members from Community Voice. The SPeCTRuM (Studying the Presence of CFRD Complications with Thoughtful Recruitment) study aims to understand the impact of CFRD on long-term health, such as issues with the eyes, kidneys, and nerves, while the CEDaR-CF (Centralized Endocrine and Diabetes Data Repository-Cystic Fibrosis) program brings together health information and samples from people with CF who experience CFRD, among other complications. Both programs are informed by Community Advisory Councils (CAC) — made up of people with CF, caregivers, and CF researchers — that help identify ways to make it easier for people with CF to participate and ensure that the programs address what matters to people with CF.
We thank the community members (pictured below, plus Cynn Salaman as part of SPeCTRuM CAC, and another Community Voice member as part of the CEDaR CAC) for sharing their time and expertise with their respective Community Advisory Councils.
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Survey Highlights Digestive System Care Needs
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As part of ongoing work to reduce the burden of living with cystic fibrosis, the CF Foundation recently surveyed community members and care teams to help identify areas of digestive system (gastrointestinal, or GI) care with the greatest unmet need. A total of 428 respondents shared their experiences with GI symptoms and care. Some key findings include:
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The most commonly seen and treated symptoms continue to be constipation, gas/bloating, and stomach pain. Respondents also reported that these symptoms are the most difficult to treat.
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Nearly half of all respondents say they are not satisfied with the current therapy options available to treat GI symptoms.
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Some of the biggest barriers to GI care that were reported include lack of GI specialists who understand cystic fibrosis, lack of basic understanding of how CF causes changes in the GI system, and difficulty determining the exact cause of symptoms.
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About half of respondents reported being referred to a GI specialist, but most reported that their symptoms were not fully resolved after seeing the GI specialist.
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We will share additional takeaways from this survey in a future monthly update. CF Foundation staff will also share these findings with clinicians and researchers at the Gastrointestinal Understandings and Treatment (GUT) Workshop in July 2026. The workshop aims to evaluate recent advances in GI diagnostic tools, review available therapies for treating GI conditions outside of CF, and identify opportunities for the Foundation to advance understanding, management, and treatment of GI symptoms in people with cystic fibrosis
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2025 CF Patient Registry Highlights Show Progress and Challenges
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Want to know more about how many people are taking Alyftrek, how transplant rates are changing, or how measures of lung function have shifted in the past five years? The annual CF Patient Registry Highlights Report shares data on a range of topics, including aging with CF, employment, education, mental health, and more.
The CF Foundation thanks the people with CF and their families who have graciously agreed to share their data through the CF Foundation Patient Registry, which helps improve CF research and care for everyone living with CF.
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CF Circle: Life With Gastrointestinal Issues
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CF Circles are topic-driven small-group discussions where adults with CF, parents, and caregivers can virtually connect with others to share experiences.
On July 28, The CF Foundation is offering a peer-led CF Circle on life with GI. Breakout groups will include conversations about digestion and pancreatic function, stomach and bowel movement symptoms (such as bloating or discomfort), and upper GI concerns such as reflux or nausea. This is a space where you can connect with others, share experiences, and get support. Contact cfcircles@cff.org for questions.
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Upcoming Webinar: Latest Research on Infections in CF
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Curious about the latest research on infections in cystic fibrosis? Join us Monday, July 27 at 7 p.m. ET for a webinar where we will explore updates on phage therapy, strategies to tackle difficult-to-treat bacteria, and new tools to detect and diagnose infections.
Can’t attend live? Register to receive the recording.
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Disability Pride Month
We are delighted to recognize Disability Pride Month throughout July. This is a month to celebrate the achievements, contributions, and experiences of people with visual, hearing, mobility, cognitive, neurological, learning, and mental health in the CF community. Join us in using this month to listen and learn from the experiences of differently abled people and explore ways to champion inclusivity within the CF community.
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This summer, watch for Community Voice opportunities to provide input on the CF Annual Insights Survey, Infection Prevention Control International Guideline Public Comment, join a Special Pathogen Analysis and Research Consortium focus group, disordered eating behavior survey, clinical trial finder focus groups, and more!
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Sharing Insights & Experiences Through the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 231 members who have written 485 posts since the CF Community Blog launched in 2015.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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