Community Voice: Monthly Results Update
January 2026 Edition
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Dear Community Voice Member,
Welcome to the January 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:
- Couples’ experiences with CF and Male Fertility
- New chapters in the CF Sexual and Reproductive Health Guide now available
- Registration open for BreatheCon 2026
- Read about the new Five-Year Strategic Plan, shaped by community input
If you would like to read about past projects, browse previous editions.
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CF and Male Fertility: Couples Share Experiences with Assisted Reproductive Technology
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Men with CF and their partners participated in interviews with researchers from the University of Pittsburgh, sharing their experiences with assisted reproductive technologies (ART), such as sperm extraction or in-vitro fertilization (IVF). Twenty-one couples who have used or considered using ART to help them have biological children participated in the interviews.
Key themes shared by couples included:
1) Most couples cited cost as their primary concern about pursuing ART, even among those who had insurance coverage or received charitable subsidies.
2) Couples want more information about the impact of CF on sperm quality, ART success rates in CF, and expected timelines of the ART process.
3) Many men with CF feel guilt or helplessness about the physical toll of IVF on their partners.
4) Men with CF experienced a “role reversal” because, during ART, it was the woman or their partner who had to go through most of the medical procedures—not them.
5) Couples highlighted the importance of teamwork and communication while undergoing ART.
Thank you to the eight Community Voice couples who participated in these interviews! The study team plans to do additional work on reducing barriers, providing support for men with CF, and investing in additional research to optimize sperm quality for men with CF.
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Bone, Heart, and Mental Health, Modulators and More: Updated CF Sexual and Reproductive Health Guide Now Available
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The CF Reproductive and Sexual Health Collaborative, also known as CFReSHC, publishes an online guide covering a range of topics related to sexual and reproductive health. The CF Sexual and Reproductive Health Guide is written by the CF community and can be used by both patients and providers to raise awareness and start conversations about these topics in care settings.
CFReSHC partnered with Community Voice members over the last two years to add two new chapters on bone and heart health. The group has updated all existing chapters with content on mental health and modulators, including sections on:
- Incontinence
- Menopause
- Sex, Gender, and Sexuality
- Vaginal Health
You can check out the fully updated guide now, which also covers body image, family building, male health, and nutrition, weight, and modulators.
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The CFReSHC team thanks the participating Community Voice members for their tremendous work that made this updated resource possible, including sharing their knowledge and insights!
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Register for BreatheCon 2026
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BreatheCon is a free virtual conference to connect with other adults with cystic fibrosis in a welcoming and inclusive space. This year, adults with CF are invited to the 10th anniversary of BreatheCon on February 20-21, 2026. In October we announced the two Community Voice members serving as the co-chairs. View the event programming and reserve your spot by registering today!
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CF Foundation's Five-Year Strategic Plan
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In case you missed it, we recently released our Five-Year Strategic Plan. This plan guides our mission-critical work, informed by key data and community insights.
We want to thank the nearly 2,000 people (including 169 Community Voice members) who shared their perspectives about how to best support the ever-evolving CF community through the strategic planning survey in fall 2024.
Read more about the Five-Year Strategic Plan or watch the Foundation’s recording of the 2026 National Annual Meeting (YouTube) for more information.
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Celebrations in the Month of February
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Black History Month
Community Voice is proud to recognize February as Black History Month, a month to celebrate the legacy, achievements, and contributions of Black Americans in their families, workplaces, and communities. Join us in using this observance month to celebrate the diversity within 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 mental health, clinical research protocols, and nutrition and digestive issues with CF during pregnancy.
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Survey: Perspectives on CFTR Modulators
A group from the CF Pharmacy/Clinical Pharmacology Alliance for Research and Collaboration (CF-PHARM), led by a pharmacist researcher from the University of Michigan, is seeking adults with CF and caregivers of people with CF to take an anonymous survey. Researchers hope to better understand how people with CF and their caregivers make decisions about taking CFTR modulators, including Trikafta and Alyftrek. The CF Pharmacy/Clinical Pharmacology Alliance for Research and Collaboration (CF-PHARM), in partnership with a pharmacist researcher from the University of Michigan, invites adults with CF and caregivers of people with CF to take a 15-minute anonymous survey by March 20:
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Community input will be used to help CF care team members better understand the interests, concerns, and potential barriers adults with CF and caregivers experience when considering or using these medications. Please note this is an external opportunity hosted beyond the CF Foundation.
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Serve as an Advisor on Patient-Centered Research
The Patient-Centered Outcomes and Research Institute (PCORI) is seeking patients and caregivers (including parents, spouses) to join its advisory panels, which help identify research priorities and develop related plans. PCORI funds patient-centered research, with a focus on addressing research questions that are important to patients and their families.
Community members can apply to four advisory panels (now through March 6):
- Rare Disease Advisory Panel
- Clinical Trials Advisory Panel
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Patient Engagement Advisory Panel
- Comparative Clinical Effectiveness Research Advisory Panel
Register for PCORI’s information session on February 9, or visit their advisory panels page to learn more:
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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 222 members who have written 472 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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