Community Voice: Monthly Update
November 2026 Edition
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Dear Community Voice Member,
Welcome to the November 2026 edition of the Monthly Update!
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:
- Update on the Pregnancy GI & Nutrition Survey
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Details from the GUT Workshop and updates on the GI Taskforce Survey
- New committee and working group members
- Upcoming CF Circles event
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A new cff.org resource
Browse previous editions to read about past projects.
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Pregnancy GI & Nutrition Survey
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Earlier this year, 30 CF community members responded to a survey from researchers at University of Texas Southwestern to better understand the nutritional needs of women with CF during pregnancy. Below are some takeaways from the survey.
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Respondents described differences in symptoms and experiences between their pregnancies, including differences in nausea, diabetes management, and nutritional concerns.
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Advice for CF care teams focused on two areas: improving pregnancy care through greater flexibility, monitoring, and care coordination; and enhancing diabetes support through stronger CF team involvement, education, and management guidance.
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Advice for individuals considering pregnancy emphasized prioritizing personal health, staying on top of treatments and medications, and seeking support when needed.
The full results of the survey are now available to read, and the researchers aim to use the findings to help create guidance around nutritional counseling for pregnant people with CF in coming years. Stay tuned for updates on how these findings may help guide discussions around nutrition for people with CF who are expecting.
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Details from the GUT Workshop and Update on GI Taskforce Survey
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Thank you to everyone who took part in the Gastrointestinal Understandings and Treatment (GUT) workshop and survey. As a reminder this workshop came about from direct feedback from the CF community during the Five-Year Strategic Plan survey where 36% of respondents mentioned digestive system (also called gastrointestinal, or “GI”) complications as most burdensome to their life with CF. This then led to the Digestive System Care Needs survey, where we sought your input to help us refine our strategy and improve GI symptoms in people with CF, as well as identify areas of GI care with the greatest unmet needs. Your input in the workshop helped us identify four key areas to focus our future GI work:
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Over the next year, the Foundation will begin developing a strategy to address these areas. We’ll share updates as this work moves forward, and we’re grateful for the community’s continued partnership.
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New Committee and Working Group Members
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Congratulations to the members below for joining their respective committees and work groups.
Clinical Research Executive Committee
The Clinical Research Executive Committee provides scientific leadership for the Cystic Fibrosis Therapeutics Development Network, establishing therapeutic priorities and reviewing proposed studies for strategic fit. Congratulations to Art Brace, who will be joining the committee for a three-year term.
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NACFC Program Planning Committee
The North American Cystic Fibrosis Conference Program Planning Committee brings together CF researchers and clinicians, CF Foundation staff, and community advisors to shape the conference’s educational content. Congratulations to Jaelyn Cooper, who will join two parents of children with CF serving on this committee for a five-year term.
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SHARING Working Group
The Sexual Health, Reproduction, and Gender Research (SHARING) Working Group aims to identify gaps in knowledge around sexual and reproductive health issues in people with CF, determine future research priorities, and develop the infrastructure needed to act on these priorities. We are excited to congratulate Elle Kellner and Jen Kyle on joining the working group for a two-year term.
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Join these upcoming CF Circles
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CF Circle: Modulator-Related Health Challenges
On Nov. 4 at 7:00 p.m. ET, the CF Foundation is offering a peer-led CF Circle for adults with CF and parents and caregivers of individuals with CF who are taking or have taken a CFTR modulator therapy. This virtual discussion offers a space to connect with others and talk about physical and mental health changes. Conversations may explore quality of life, mood, sleep, memory issues, GI symptoms, and more. Registration is open.
CF Circle: New CF Diagnosis
On Nov. 17 at 7:00pm E.T., the CF Foundation is offering a peer-led CF Circle for people diagnosed with cystic fibrosis in the last three years, including adults with CF and parents or caregivers of newly diagnosed children. This virtual discussion provides a space to connect with others and feel supported. Registration is open.
For questions, email cfcircles@cff.org.
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A to Z Resource Available on CFF.org
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A new page on cff.org, CF A-Z: Health Topics and Quick Links, makes it easier to find health information and resources for people with CF and their families. The page offers an alphabetical list of health topics, along with quick links to commonly used tools and resources. Use this new page if you are looking for specific health information or resources relevant to you or your loved one’s unique situation.
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Celebrations in the month of November
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Native American Heritage Month
We are happy to recognize the month of November as Native American Heritage Month and honor the traditions, history, and impact of the Native/Indigenous American community. Join us in taking this time to absorb and understand the diverse cultures that make up the Indigenous CF community and build a more inclusive community together.
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Watch for opportunities to join the Clinical Research Committee, provide input on Cystic Fibrosis-Cognitive Behavioral Therapy for lung transplant, 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 489 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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