Community Voice: Monthly Results Update
August 2025 Edition
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Dear Community Voice Member,
Welcome to the August 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:
- Early results from the CF menopause survey
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Reproductive genetic counseling community perspectives
- New and continuing projects by and for the CF community funded by Impact Grants
- An upcoming Community Voice Town Hall and CF Circle on life as a Hispanic person with CF
If you would like to read about past projects, browse previous editions.
Back to School with CF: As many schools start or are already back for a new year, check out these CF-specific resources, including tips for establishing routines and transitioning to a new school.
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Menopause in CF: Symptoms, Management, Bone Health, and More
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Now that more women with CF are reaching perimenopause and menopause, researchers and clinicians want to better understand how they experience this life stage. In a May 2025 survey about menopause in CF, researchers aimed to learn what symptoms women with CF experience and how they manage them, which providers they discuss menopause with, and the status of other important health markers such as bone health and history of blood clots.
- Sleep disturbances, mental and physical exhaustion, and irritability were the most frequently reported symptoms.
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Women used both hormonal (estrogen and/or progesterone, such as birth control pills) and non-hormonal (including antidepressants) medicines to manage their symptoms, as well as herbal supplements (like flaxseed, ashwagandha, and ginseng).
- Almost all respondents had had a bone density scan before; most have scans every 2 years.
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Many respondents had experienced a blood clot, which may influence what medicines providers recommend to manage menopause-related symptoms.
Researchers plan to use the survey results to develop or update learning materials and conversation guides for people with CF and their providers. Thank you to the 118 community members who shared their experiences through the survey!
For more information on CF and menopause, check out the CF Reproductive and Sexual Health Collaborative (CFReSHC) Guide’s Menopause chapter. Stay tuned for additional updates to the CFReSHC Guide, and for more news about work focused on menopause in CF!
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A Need for More (and Earlier) Genetic Counseling for People with CF Considering Becoming Parents
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As more people with CF are thinking about becoming parents, researchers want to better understand how to support their decision-making. Reproductive genetic counseling provides families with information about how genetic conditions (like CF) might be passed on to children, including testing options.
Researchers at the University of Pittsburgh interviewed Community Voice members in 2023 about their reproductive genetic counseling experiences.
- While participants understood the role and valued the knowledge of genetic counselors, half of those interviewed had never met with one.
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People with CF suggested that genetics information (like how the CF gene is inherited or explaining different mutations) should be brought up in clinic when people are children or teenagers.
Read the full article (free/open access) for more information about the types of genetic testing options available and to read perspectives that people with CF shared in their own words. The researchers recommended follow-up work to build reproductive genetic counseling into CF care appointments. They noted these discussions should be nondirective, meaning they support and empower people with CF to make their own decisions without clinicians providing direct advice.
A sincere thank you to the 21 Community Voice members who took time to participate in these interviews!
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2025 Impact Grant & Community Support Grant Recipients
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This August, the CF Foundation is celebrating 10 years of Impact Grants with the announcement of our 2025 recipients. These grants, along with the CF Foundation’s Community Support Grants, were awarded in consultation with two review committees (CF Foundation Adult Advisory Council and Community Support Grant Review Committee) of adults with CF who are members of Community Voice.
In total, 16 community members participated in the review and recommendation of proposals for the 2025-2026 award year, resulting in the funding of:
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4 new Impact Grants
- 5 Community Support Grants
- 5 existing community grants (extended for another year)
All Impact and Community Support Grant projects provide free services, support, or activities for the CF community. Check them out!
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Register Today for the Sept. 24 Community Voice Town Hall
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In case you missed it, registration for the Community Voice Town Hall is now open! Join us as we continue to celebrate the first 10 years of Community Voice with a special panel featuring community members and CF Foundation staff, plus get a sneak peek at current and future opportunities to shape, research, care, and more. See how Community Voice members like you have shaped research, care, and programs for the CF community on Wednesday, September 24 from 7 – 8 p.m. ET.
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CF Circle: Life as a Hispanic Person with CF
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CF Circles are topic-driven small group discussions where adults with CF (and sometimes caregivers) can virtually connect with others about shared experiences.
On September 9, the CF Foundation is offering a community member-led CF Circle for people with experience living as a Hispanic or Spanish-speaking person with cystic fibrosis and their caregivers. This small group discussion is an opportunity to meet other adults with cystic fibrosis and caregivers, build social connections, and share experiences in a supportive environment.
Register today for either session (offering an early and a late option to accommodate different time zones):
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Session 1: Tuesday, September 9th @ 7:00pm ET (6:00pm CT/5:00pm MT/4:00pm PT)
- Session 2: Tuesday, September 9th @ 9:30pm ET (8:30pm CT/7:30pm MT/6:30pm PT)
Contact to Kelsey Logan with any questions.
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Over the coming weeks, Community Voice will share opportunities to participate in projects related to health equity, lung transplantation, and CFTR modulator use during pregnancy.
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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 209 members who have written 453 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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