Community Voice: Monthly Results Update
October 2025 Edition
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Dear Community Voice Member,
Welcome to the October 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:
- A recap of the Community Voice Town Hall, celebrating 10 years of community input
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Early findings from community interviews about LGBTQIA+ experiences with CF care
- An upcoming CF Circle on CF-related diabetes
- Your BreatheCon 2026 Community Leaders
If you would like to read about past projects, browse previous editions.
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Celebrating 10 Years of Impact: Community Voice Town Hall Recap
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Thank you to everyone who joined us for our special 10-Year Anniversary Town Hall on September 24!
This event celebrated a decade of impact driven by the CF community. We were honored to feature a powerful panel discussion with Community Voice members Will Corcoran (adult with CF) and Michelle Bowers (parent of a child with CF), alongside CF Foundation staff Karen Carey and Dara Riva.
The town hall featured:
- The story of your impact over the last 10 years
- A community panel discussion on the power of partnership
- A preview of exciting projects ahead and opportunities to share your voice
If you couldn’t attend, you can watch the recording. If you would like to share your thoughts on this event after attending or watching the recording, please take this brief survey.
We look forward to another decade of partnering with you!
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LGBTQIA+ Experiences with CF Care – PRIDE CF Update
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PRIDE CF is a multiphase study to understand the care experiences of lesbian, gay, bisexual, transgender, queer/questioning, intersex, and asexual (LGBTQIA+) individuals with CF. As part of this ongoing work, researchers sought to explore care patterns, preferences, and experiences of those in the LGBTQIA+ CF community through interviews over the summer.
From these initial interviews, researchers have identified four themes so far related to the healthcare needs and experiences of the LGBTQIA+ CF community, including a sample quote for each:
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Care Navigation - "[…] Finding a therapist who not only can cover something like CF, but also maybe understands disability, understands sexuality, understands the intersection between the two of them is very, very difficult."
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Weight & Eating - “It was a very, very colored past with eating. Yes. It has gotten a whole lot better, especially since transitioning. I feel like I'm more comfortable in my body and more accepting of everything. So yeah, I think it's gotten a lot better. I still go through the times when I don't feel like eating, but it is what it is... because I feel like a part of it is because I'm more comfortable in how my body is developing now and has developed currently. I'm more inclined to kind of sustain that."
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Communicating Identity - "And so when the time came for me to come out about my gender identity, I was really scared. And I'm still sort of particular about the people I'm really open about it with. But I felt like it was an important part of me to let my team know about because I stopped wanting to be called [given name], and I wanted them to call me [affirmed name]. And so I was like, 'Okay, well, I'm just going to come out to the doctor first.' And then she was super cool about it. "
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Navigating the World – “And I feel like I've had a very lucky experience with being gay, having so much support for my family and friends and stuff. But medically, there's always this slight hesitation. You're always having to come out in ER situations, in all that stuff, where just saying, ‘This is my wife, [my partner],’ is part of the situation, and you don't know how people are going to do it. And that's one of the reasons I love my clinic."
The research team is seeking to conduct additional interviews in early 2026 and share additional findings at that time. Thank you to the 10 Community Voice members who participated in these interviews!
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CF Circle: CF-Related Diabetes
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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 November 11, the CF Foundation will offer a CF Circle for adults with CF to talk about their experiences around pre-diabetes or CF-related diabetes (CFRD) with others who share similar experiences. This small group discussion is an opportunity to meet other adults with cystic fibrosis, build social connections, and share experiences in a supportive environment.
Register today and save your seat for Tuesday, November 11 at 7:00 p.m. ET
Contact Kelsey Logan with any questions.
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Community Leaders Announced for BreatheCon 2026
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BreatheCon is a free, online, community conference to connect with other adults with cystic fibrosis in a welcoming and inclusive space. We are happy to announce the two Community Voice members below joining serving as the Co-Chairs.
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The CF Foundation’s Community Conferences team is excited to host the 10th Anniversary of the event on February 20-21, 2026. Registration opens in December – sign up to be notified when registration launches!
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Celebrations in the Month of November
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Native American Heritage Month
We are delighted to recognize the month of November as Native American Heritage Month and honor the traditions, history, and contributions of the Native/Indigenous American community. Let’s take this time to learn about and appreciate the diverse cultures that make up the Indigenous CF community and help build a more inclusive community together where everyone feels welcome.
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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 216 members who have written 462 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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