Community Voice: Monthly Results Update
September 2025 Edition
|
|
|
Dear Community Voice Member,
Welcome to the September 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:
- Selected sessions to be livestreamed at the 2025 NACFC
-
A new member joining the Clinical Research Executive Committee (CREC)
- Key findings from survey to
improve conversations around contraception in CF care
- Lived experiences from the CF Community on why Medicaid matters
If you would like to read about past projects, browse previous editions.
|
|
|
NACFC Livestream Session Survey Results
|
|
|
Earlier this year, the CF Foundation surveyed the CF community to learn which sessions they would want to watch as a live online broadcast from the 2025 North American Cystic Fibrosis Conference (NACFC). Thank you to the 160 CF community members, including Community Voice and Adult Advisory Council (AAC) members, who completed the survey!
Based on results from the community survey, the following NACFC sessions will be livestreamed:
Thursday, October 23 from 2:30-4:30 p.m. PT
- The Need for Comprehensive CF Care to be "Ageless"
- Cure (or Close) for All
Friday, October 24 from 2:30-4:30 p.m. PT
-
Modulator Effects on Different Organ Systems
- Beyond Boundaries: Protecting & Supporting Optimal Care for All People with CF
Saturday, October 25 from 10:15AM-12:15 p.m. PT
-
Charting the Course: Tackling the Challenges of Healthcare Accessibility (Symposium 26)
- Phage is the Rage: Demystifying Phage Therapy (Symposium 27)
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 — no registration required.
|
|
|
Clinical Research Executive Committee Welcomes New Member
|
|
|
The Clinical Research Executive Committee (CREC) sets scientific priorities for the CF Therapeutics Development Network (TDN). The CREC includes both care center staff and community members. In addition to setting priorities, the committee also reviews and approves protocols for studies (clinical trials that people with CF enroll in) conducted at TDN sites across the country.
To ensure the voice of the CF community remains at the center of CF research, the CREC includes two people with CF representing different experiences with modulators — one community representative who is taking and benefitting from a modulator and one who is not taking and/or cannot benefit from a modulator. The committee recently recruited a new community member, and we would like to congratulate the Community Voice member below who will join the CREC for a three-year term!
|
|
|
Improving Conversations Around Contraception in CF Care
|
|
|
A July 2025 survey of women with CF revealed opportunities for earlier and more thorough conversations around contraception (or birth control) with CF care teams. Some key findings include the following:
- While 90% of respondents were not actively trying to conceive, only 55% were currently using a form of contraception.
- A majority (about 70%) of respondents would like to get information about contraception from their CF care team, but only about 30% report that their care teams shared that information.
-
Side effects are a key part of the conversation. Nearly 80% of respondents said they choose their contraception method based on side effects (more so than how effective the contraceptive is). About 70% of contraceptive users had experienced side effects, and these effects were the most common reason for stopping birth control.
-
While respondents said that conversations around contraception should start at age 14 or 15, most respondents said their care team only discussed it after they turned 18, if at all.
Researchers hope to use the results of the study to encourage CF care teams to have earlier, more robust conversations about contraception. They also hope to include team members like pharmacists, who are well positioned to offer information and advice, in these conversations. Thank you to the 97 community members across the U.S. and Canada who completed the survey!
|
|
|
Why Medicaid Matters: CF Community Advocates for Continued Coverage
|
|
|
More than half of children and more than one-third of adults living with CF rely on Medicaid coverage for their health care needs. That’s why this spring, when Congress introduced legislation that would restrict eligibility and cut Medicaid, the CF Foundation’s Policy and Advocacy team partnered with Community Voice to hear directly from people with CF in key states who rely on the program, along with their parents and partners. Participants shared powerful stories about how Medicaid makes their care possible — and spotlighted how proposed changes to eligibility or cuts to the program would impact their CF care.
The CF Foundation included these lived experiences in our June 2025 letter to Congressional leadership. Read the letter in full, including community member experiences.
Thank you to the seven Community Voice members who, alongside more than 70 other community members, shared their Medicaid stories to demonstrate to lawmakers the importance of Medicaid for the CF population. Your testimony helped to shift the debate, slowed momentum, and forced hard conversations on Capitol Hill. The CF Foundation will continue working hard to share your stories about the impact of these cuts and amplify your voices to advance policies that protect and expand access to care.
Sign up to receive advocacy action alerts when your voice is needed most.
|
|
|
Celebrations in the Month of September
|
|
|
Hispanic Heritage Month
We are delighted to recognize September 15 through October 15 as Hispanic Heritage Month and honor the vibrant traditions, history, and contributions of the Hispanic community. Let’s take this time to learn about and appreciate the diverse cultures that make up the Hispanic CF community and help build a more inclusive community together where everyone feels welcome.
|
|
|
Over the coming weeks, Community Voice will share opportunities to participate in projects related to clinical research, male fertility, and health equity.
|
|
|
Sharing Insights & Experiences Through the CF Community Blog
|
|
|
Check out these recent blog posts by Community Voice members! Community Voice currently has 212 members who have written 457 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.
|
|
|
|
