Community Voice: Monthly Update
September 2026 Edition
|
|
|
|
Dear Community Voice Member,
Welcome to the September 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
- A reminder that the Annual CF Insights Survey is live
-
Key takeaways from the Community Blog Survey
- Sessions to be livestreamed at the 2026 NACFC and virtual registration
- Initial results from the Hormone Position Paper Survey
- Upcoming events: CF Circle
If you would like to read about past projects, browse previous editions.
|
|
|
|
Still Time: Annual CF Insights Survey
|
|
|
|
The CF Foundation wants to hear from you! The new Annual CF Insights Survey gives you the space to share your big picture — what’s working, what’s hard, and what would make a real difference for the CF community. The survey is completely anonymous and takes about 10-15 minutes. Your perspective helps the CF Foundation, care teams, and researchers better respond to the evolving needs of the CF community, grounded in your real experiences and not assumptions.
|
|
|
|
Survey open through September 7. Once complete, you can opt in for a chance to win a $20 gift card (subject to eligibility).
|
|
|
|
There are six symposia sessions that will be livestreamed at this year’s NACFC. Which of the following symposia received the highest percentage of votes? Click below to choose your answer:
|
|
|
|
Key Takeaways from the CF Community Blog Survey
|
|
|
|
The CF Community Blog, a platform for sharing experiences, reflections, and stories from across the CF community, will use feedback from 93 Community Voice members to inform its future direction. Below are some of the key takeaways from the Community Blog Survey.
-
Social media and emails are the most common ways people learn about new blog posts.
- Most respondents who have written for the CF Community blog reported a positive experience.
- Respondents value the blog’s variety of topics, sense of community, and role as a trusted resource.
-
Some respondents expressed a desire for more candid and unfiltered perspectives.
This feedback will be used to ensure the blog continues to best serve the community. We would like to thank everyone who participated and shared their experiences.
|
|
|
|
Stream These Sessions During The 2026 NACFC
|
|
|
|
Recently, the CF Foundation surveyed the CF community to learn which sessions people would most like to watch via livestream from the upcoming 2026 North American Cystic Fibrosis Conference (NACFC). Thanks to more than 140 Community Voice members who shared their feedback.
Based on survey results the following NACFC sessions will be livestreamed. You can now register for virtual NACFC at no cost and watch these sessions live on the dates and times listed below.
Thurs., Oct. 8, 4:30 - 6:30 p.m. ET
- Eras Tour: Aging with CF in a Changing World
-
Tinker, Topple or Tighten? Optimization of CFTR Modulator Therapies: Right Drug, Dose & Patient
Fri., Oct. 9, 2:30 - 4:30 p.m. ET
-
One Disease, Many Realities: The Multiple Faces of CF
- Raising Our Voice: Advocacy & Policy Shaping CF Care
Sat., Oct. 10, 10:15 a.m. – 12:15 p.m. ET
-
Movement is Medicine: Building Resilient Bodies in CF
- Who Covers What? Partnering with Primary Care in the CF Care Model
Note: All three plenary sessions (keynote speakers and presentations) will also be livestreamed. Recordings of many NACFC sessions, including plenaries, symposia, discipline groups, and lunch-and-learns, will be posted on the Foundation’s YouTube channel soon after the conference.
|
|
|
|
Initial Results from the Hormone Position Paper Survey
|
|
|
|
In our last edition, we shared the members of the Hormones Position Paper Committee. This month we are excited to share highlights from the related survey, which helped prioritize the hormone-related topics that the forthcoming guidance will cover. We received nearly 50 survey responses, which gave the committee a starting point to discuss pre- and post- menopause, as well as testosterone across the lifespan. Exact content will be fleshed out at the committee’s September kickoff meeting.
Big thanks to all survey respondents. These results will help the committee in supporting recommendations for hormone treatments in CF.
|
|
|
|
CF Circle: The Hispanic CF Experience
|
|
|
|
Join a peer-led, small-group discussion for Hispanic adults with cystic fibrosis and parents or caregivers of Hispanic individuals with cystic fibrosis at 9 p.m. ET on Sept. 22. Together, you’ll have space to connect, share, and support one another. Discussion groups will be available in English and Spanish.
|
|
|
|
Conecte con otras persona para compartir experiencias sobre la fibrosis quística en la comunidad hispana
|
Únase a una conversación en grupos pequeños, facilitada por personas con experiencias similares, para adultos hispanos con fibrosis quística y padres, madres o cuidadores de personas hispanas con fibrosis quística, a las 9 p. m., hora del este, el 22 de septiembre. Juntos, tendrán un espacio para conectarse, compartir y apoyarse mutuamente. Los grupos de conversación estarán disponibles en inglés y español.
|
|
|
|
Interviews: Opportunity to Provide Feedback on a G-tube Decision Aid for Children with CF
Researchers at Children's Healthcare of Atlanta and Emory are conducting a study that aims to improve gastronomy tube (G-tube) decision-making in early CF care. They have created an online tool for families considering G-tube placement. They are looking for parents and caregivers to provide feedback on the tool (30-to-45-minute audio recorded interviews) to help ensure it is understandable and usable for families.
Researchers are seeking parents or primary caregivers of children between the ages of 1-10 who have had a conversation with their care team about a G-tube placement for their child with CF but do not currently have a G-tube. To learn more about the study, please contact Kimberly Dickinson MD/MPH by email at kdickin@emory.edu. Parents or caregivers who complete an interview will receive a $75 gift card for their time.
Please note this is an external opportunity hosted beyond the CF Foundation.
Help identify research gaps in sexual and reproductive health:
The Sexual Health, Reproduction, and Gender Research (SHARING) Working Group is conducting an international survey to identify areas where more research is needed, and to understand which topics matter most to the CF community. The survey is anonymous and should take about 5-8 minutes to complete. Please note that this survey is hosted outside the CF Foundation. Take the survey by Sept. 23.
|
|
|
|
Watch for opportunities to provide input on a Disordered Eating Survey, rare infections focus group, Clinical Trials Finder focus group, Infection Prevention Control International Guideline Public Comment, and more!
|
|
|
|
Sharing Insights & Experiences Through the CF Community Blog
|
|
|
|
Check out these recent blog posts by Community Voice members! Community Voice currently has 231 members who have written 486 posts since the CF Community Blog launched in 2015.
Interested in sharing your story? The CF Community Blog wants to hear from you.
|
|
|
|
4550 Montgomery Ave Suite 1100 N | Bethesda, MD 20814 US
|
Manage your preferences
Opt Out of this mailing list | Opt out of all CF Foundation emails
Got this as a forward? Sign up to receive our future emails.
View this email online.
|
This email was sent to .
To continue receiving our emails, add us to your address book.
|
|
|
|
|
