Community Voice: Monthly Results Update
July 2025 Edition
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Dear Community Voice Member,
Welcome to the July 2025 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:
- Community advisors for the REACH study to advance therapies for people not taking modulators
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Survey results on attitudes about medications and vaccines
- An international committee updating infection prevention and control guidelines
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A new member joining the CF Foundation Education Committee
- Survey update and resources related to navigating school and CF
If you would like to read about past projects, browse previous editions.
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REACH Study to Advance Therapies for Those Without Modulators: Community Advisors
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The Research Study to Advance the CF Therapeutics Pipeline for People without Modulators (REACH) is a study for all people with CF who do not take CFTR modulators, regardless of their reason. The goal of REACH is to help advance new therapies for people with CF who are not taking modulators. The REACH study is unique because it will create an important data set or information bank about people not taking modulators to support study planning and possibly serve as control (or baseline) data for genetic-based therapies trials.
Through Community Voice and beyond, the REACH study team recruited adults with CF currently not benefiting from modulators to join their community leadership boards including the REACH Community Advisory Board and the REACH Social Engagement Advisory Board. These community representatives will work directly with researchers, sharing their lived experiences, providing ongoing feedback on the study’s materials and website, and providing advice on study recruitment and retention efforts. Congratulations and thank you to all the community members below that are working with the REACH team to advance this crucial research.
REACH Community Advisory Board members (two not listed):
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REACH Social Engagement Advisory Board members (one member not listed):
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Perspectives of People with CF and Caregivers on Medication Types and Vaccines: Survey Results
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Researchers at the University of Michigan developed a survey to understand how the CF community feels about various treatments, including common CF medications (such as inhaled dornase alfa, hypertonic saline, and antibiotics), current CFTR modulators, future genetic therapies, and vaccines (such as the COVID-19 and flu vaccines).
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The survey was sent out late last year to Community Voice members and 215 of you responded – thank you to everyone who participated! Here are some results from the survey:
Vaccines: Most respondents (89%) identified physicians, pharmacists, and nurses as their main sources of vaccine information. Respondents were the least comfortable with the COVID-19 vaccine (23% expressed discomfort) compared to the flu vaccine (12% expressed discomfort) and childhood vaccines (6% expressed discomfort).
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CFTR Modulators: Most respondents (82%) felt comfortable taking modulators, and 89% of respondents considered them effective.
- Future Genetic Therapies: Most respondents (
92%) were interested in learning more about potential future genetic therapies. While 42% felt comfortable taking them if available today, about half (50%) were still hesitant.
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Survey results show that people with CF and their caregivers highly value medication and vaccine recommendations from their CF care teams and that newer medications are not necessarily viewed negatively. These results will be used to inform CF clinicians about the different perspectives on CF medications and vaccines from the community to encourage a more collaborative approach to care, including open and patient-focused discussions about current and new medications and therapies. We will share additional results from this work, including publications, as they become available.
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Infection Prevention and Control International Guideline Committee: New Members
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The CF Foundation and the CF Trust (a UK-wide nonprofit for supporting people with CF) established an international committee to review and potentially update care guidelines addressing infection prevention and control (IPC) for CF. If the evidence indicates it is necessary, the updated guideline will reflect current science and address topics such as how germs are transmitted, monitoring and detection, health care and non-health care settings, and how to best educate people about IPC. The committee includes members of clinical care teams, staff from the CF Foundation and UK Trust, and CF community members (adults and parents) from the U.S. and UK.
We are happy to announce that three Community Voice members (one member not listed) will serve on this group for a two-year term!
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CF Foundation Education Committee: New Member
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The CF Foundation’s Education Committee works to improve the lives of people affected by CF by educating patients, families, health care providers, staff, and volunteers through access to current, high-quality CF educational materials. The committee partnered with Community Voice in April to recruit a parent of a child with CF to serve on the committee alongside another parent, two adults with CF, and clinicians from multiple disciplines. We are happy to announce the Community Voice member below who will serve on this group for a three-year term!
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Navigating School and CF: Survey Update
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Last August, researchers from Cincinnati Children's Hospital, in partnership with the CF Foundation, surveyed the CF community on how CF impacts school life. They asked people with CF currently or recently in high school and adult family members of students with CF about things such as attendance, relationships with peers and teachers, and advocating for CF-specific needs. The information gathered will help CF care teams better serve the community by providing more school-specific resources.
The team is now working on a handout for patients and families to share what they learned. In the meantime, you can find resources about CF and school (such as creating routines, Individualized Education Programs and 504 plans, and school transitions for people with CF) on the CF Foundation's website under “CF and School.”
Thank you to the Community Voice members who participated in the survey! We look forward to sharing the full survey findings and publication with you in the coming months.
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Over the coming weeks, Community Voice will share opportunities to participate in projects related to men’s reproductive health – including assisted reproductive technology (such as IVF and IUI) – and lung transplantation.
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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 207 members who have written 447 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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