Community Voice: Monthly Results Update
April 2026 Edition
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Dear Community Voice Member,
Welcome to the April 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
- In case you missed it, our Community Voice Annual Report is now published!
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Interviews highlighting Parent perspectives on discussing male infertility with their child with CF
- An upcoming CF Circle on Navigating Modulator-Related Health Changes
If you would like to read about past projects, browse previous editions.
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Community Voice Annual Report
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In case you missed it in your inbox, our latest Community Voice annual report is now available for members to read! The report covers all the contributions you made to 2025 projects, whether it was a survey, committee, interview, focus group, or other type of project! Thank you to everyone who shared a photo, quote, or even helped shape research, care, and community programs by participating in any of the projects mentioned in the report. We hope you continue to enjoy seeing the difference you have made no matter how big or small!
Check it out and hear from others in the program on how their experience and time made a real difference for people with CF and their families.
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Parent Perspectives on Discussing Male Infertility With their Child With CF
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University of Pittsburgh researchers interviewed parents of boys and young men with CF who shared what they know about male fertility and CF, and their plans to discuss the topic with their child. While researchers will continue to analyze the information from these interviews, they shared some early themes:
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The emotional impact: Parents described the emotional impact of learning about their child’s infertility, including feelings of sadness, grief, anger, and internalized guilt.
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Why conversations are delayed or avoided: Many parents noted that discussions of more immediate health concerns were often prioritized over discussions of sexual and reproductive health. Other reasons included their child’s age, maturity level, and interest in parenthood, and the parents’ hope that their child might be fertile/able to have children or that new CF treatments would cure male infertility.
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What would help: Parents expressed that they want to partner with their child’s CF care team to decide when and how to talk about male infertility in ways that build trust and confidence with their son. Most parents also want more information — such as research findings and age-appropriate discussion guides — to support conversations about sexual and reproductive health topics, including infertility.
- The importance of community support: Most parents said they valued the opportunity to connect with other parents in the CF community to hear personal anecdotes and success stories.
The researchers will continue to analyze the themes from these interviews and will share final results as soon as they are available. They plan to use the findings to identify what resources and support parents of boys and young men with CF need and the role they would like their care team to play.
Thank you to the 21 participants – including 11 Community Voice members – who shared their family’s experiences with the researchers! Stay tuned for an opportunity for partners/spouses of adult men with CF to participate in interviews about their related perspectives and experiences (interested and eligible individuals who are members of Community Voice by May 8 to receive an invitation).
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CF Circle: Navigating Modulator-Related Health Changes
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The upcoming CF Circle on May 19 at 7 p.m. ET, offers a supportive virtual space for adults with CF to discuss challenging physical and mental health changes while taking CFTR modulator therapy. Topics may include quality of life, mood, sleep, memory issues, GI symptoms, and more. Registration is available online. For questions, contact Kelsey Logan.
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Celebrations in the Month of May
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Cystic Fibrosis Awareness Month
We are also celebrating CF Awareness Month in May! Community Voice is inspired by every person with cystic fibrosis and the incredible members of the CF community that support them. Use #CFAwarenessMonth to help raise greater awareness of life with cystic fibrosis. Visit the digital downloads section for more ways to share your unique achievements and milestones on social media.
Asian American, Native Hawaiian, and Pacific Islander (AANHPI) Heritage Month
We are proud to recognize May as Asian American, and Pacific Islander (AAPI) Heritage Month. We invite members of Community Voice to celebrate the many contributions, achievements, and diversity of the AAPI CF community and help foster a more inclusive community together.
Mental Health Awareness Month
May is also Mental Health Awareness Month, which provides the opportunity to highlight the importance of mental health while destigmatizing it. Mental health includes emotional, psychological, and social well-being, which is experienced through all stages of life. Depression, anxiety, and other mental health conditions can be treated. Learn more about mental health and CF.
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This spring, look out for Community opportunities related to nutrition and digestive symptoms during pregnancy, sexual and reproductive health, and experiences with Medicaid.
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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 230 members who have written 482 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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