Community Voice: Monthly Results Update
February 2026 Edition
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Dear Community Voice Member,
Welcome to the February 2026 edition of the Monthly Results 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 from the Clinical Research Committee
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Development of new mental health resources for panic attacks and preparing for lung transplant
- Results from the Community Voice annual survey
If you would like to read about past projects, browse previous editions.
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Clinical Research Committee Welcomes New Community Grant Reviewers
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The CF Foundation’s Clinical Research Program recently welcomed 5 new Community Grant Reviewers to its Clinical Research Committee (CRC). Community Grant Reviewers help shape research by reviewing study plans and providing feedback on projects’ feasibility and relevance to people with CF. This feedback helps inform overall funding decisions and is shared with researchers to help improve their research plans.
We are pleased to welcome the five Community Voice members below to the CRC! Thank you for sharing your time and insights to help make research studies more effective and impactful for people with CF and their loved ones.
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Community Co-Developing Mental Health Resources
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Both the CF community and care team members have identified mental health as a top priority. The CF Foundation’s Mental Health Advisory Committee is working to develop resources to support people with CF and their families on topics related to mental health. As part of this work, the committee sought additional community expertise through Community Voice to shape:
- resources on panic attacks in CF
- a new handout on the emotional and social support needed when considering a lung transplant
Four Community Voice members with lived experience in panic, anxiety, and/or lung transplant will co-develop these resources in 2026. Thank you to the community members for bringing their personal experiences to this work, and we look forward to sharing the resulting materials with you once they are available.
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Community Voice: 2025 End-of-Year Survey Results
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Each year, we conduct our annual survey to gather feedback from Community Voice members and learn how to improve the program. This time, 126 of you shared your thoughts on everything from program communications to the types of opportunities we share, and topics that are important to you. We learned:
- Members continue to be satisfied with their experience in Community Voice.
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Many members still feel that their contributions have had a positive impact and have made a difference in care and research, that their perspectives and experiences are valued, and that they feel included in the CF Foundation's work.
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Readers remain satisfied with our Monthly Results Updates yet they feel there is an area of opportunity to improve the updates’ scope and content.
- Some members offered ideas on how to improve Community Voice, particularly around enhanced communications for members and the various types of opportunities that members can participate in.
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Others shared insight into what they wished clinicians, researchers, and the CF Foundation knew about their experiences and needs regarding CF and what topics they want to be addressed.
You can view the full results via the button below.
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As always, we will use the responses to this survey to shape our areas of focus throughout 2026, including improving your experience reading about and applying for projects, and the ways we share results from research you support. Thank you to everyone who responded – you help make Community Voice stronger!
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Get Additional Research and Care Updates
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If you are interested in receiving monthly updates on the latest CF research and health news, sign up for the CF Foundation’s Research and Care email.
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Celebrations in the Month of March
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Women's History Month
Community Voice is proud to recognize March as Women’s History Month. We invite you to use March to celebrate the impacts and accomplishments of women, past and present, who have made a lasting impression on our families, community, and society. Join us in using this observance month to celebrate the resilience of the CF community and build a more inclusive community together.
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Over the coming weeks, Community Voice will share opportunities to participate in projects related to nutrition and digestive symptoms during pregnancy, gastrointestinal (GI) symptoms more broadly, and how men with CF think about their identity in the context of fertility and manhood.
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CFTR Modulator Use During Pregnancy Community Survey
Researchers at the University of Arkansas are gauging CF community perspectives on and experiences with CFTR modulator use during pregnancy and breastfeeding through a community survey. By understanding people’s concerns about and interest in taking modulators during pregnancy, the researchers hope to find out what information could be better communicated and work to improve related conversations in clinic between health care providers and families.
People with CF and their family members (including parents/caregivers, spouses/parents, and children of people with CF) can take the survey now through April 27. Participants who complete the survey will be entered to win one of 20 $50 gift cards.
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Please note this is an external opportunity hosted beyond the CF Foundation.
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Managing CF Together: Parents & Children Survey
Researchers at the University of Washington invite parent/child pairs (where the child with CF is 6 to 14 years old) to take a survey to share their experiences working together to support the child’s health. The researchers are seeking to better understand how families experience CF care and how shared responsibility develops across childhood to improve related resources and conversations in CF clinics.
Parents can sign up and take the survey at the link below. Children will complete their survey through a scheduled Zoom interview. Participants who complete the process (estimated at 1-2 hours total) will receive one $50 gift card per family.
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Please note this is an external opportunity hosted beyond the CF Foundation.
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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 224 members who have written 475 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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