Community Voice: Monthly Results Update
March 2025 Edition
|
|
|
Dear Community Voice Member,
Welcome to the March 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:
- Members joining the new CF Foundation Nontuberculous Mycobacteria (NTM) Guideline Committee
-
Results of interviews on Experiences with Trust and Health Care
- A community editorial detailing Pain in People with CF
- Community Conferences: ResearchCon registration and BreatheCon recordings
If you would like to read about past projects, browse previous editions.
|
|
|
CF Foundation Nontuberculous Mycobacteria (NTM) Guideline Committee
|
The CF Foundation established a committee to update the nontuberculous mycobacteria (NTM) guideline to reflect current CF evidence. The guideline will address topics such as epidemiology and risk factors, screening and diagnosis, microbiology and culture-independent biomarkers, and treatment. The committee includes microbiologists, epidemiologists, clinicians, and CF community members (people with CF and a parent of a child with CF). We are happy to announce the three Community Voice members who will serve on this group for a two-year term!
|
|
|
Experiences with Trust and Health Care - Update
|
|
|
People with CF and their family members have identified trust as essential for partnering effectively with their care teams. In 2024, researchers interviewed adults with CF and parents/caregivers of children with CF to better understand trust dynamics between people with CF and clinicians, including how they have experienced trust or a lack of trust in care settings. In recorded interviews, community members shared their experiences with a range of care topics related to trust, including:
- How modulators have changed CF care
- Coordination between clinicians
- Experiences with clinical trials and research
The audio and video recordings are being used as part of care team training to show what builds or hurts trust to improve CF care experiences. For example, video clips in which community members shared why they did or did not participate in research are now part of a new training program for clinical research coordinators on how to partner with the CF community. To learn about ongoing efforts to support more productive conversations about care, see the CF Foundation’s Partnerships for Sustaining Daily Care webpage.
Thank you to the 35 individuals — including 22 Community Voice members — who participated!
|
|
|
Three members of Community Voice wrote an editorial urging health care providers to better understand their experiences with CF-related pain. “Pain is a constant in our lives with CF: Please believe us” was published in the Journal of Cystic Fibrosis following the community members’ work as part of the CF Foundation’s Pain Guidelines committee. Takeaways from the article include:
- The new pain guidelines can help care teams more effectively recognize and manage pain in people with CF.
-
Incorrectly assuming that all pain that people with CF experience is attributed to the lungs may cause care teams to overlook the many other ways in which pain manifests in people with CF (such as joint issues and arthritis, gastrointestinal, sinus headaches and migraine, etc.)
-
Although pain is awful to experience, being disbelieved by a care team member is excruciating, especially when dealing with multifaceted pain due to lung transplantation.
- CF care teams and people with CF should work together as partners to address CF-related pain.
We would like to congratulate Noor Elshaar, Cade Hovater, and Kasey Raffensperger for their work on this publication, and for covering this very important topic that members of the CF community face.
|
|
|
Community Conferences: ResearchCon Registration and BreatheCon Recordings
|
|
|
ResearchCon is a free, online community conference for everyone with a personal or professional connection to cystic fibrosis to learn and discuss CF-related science and care alongside others living with and studying the disease. This virtual event provides a space to ask questions and participate in discussions that equip you with knowledge to better advocate for yourself, your loved ones, or your patients. ResearchCon will take place on May 6. Register now and save the date!
|
|
|
Additionally, we want to give a sincere thank you to the Community Voice members and other community members who supported this year’s BreatheCon held on Feb. 7-8. This year’s BreatheCon was attended by 217 adults with CF who connected via virtual social chats and happy hours, shared their experiences in small group discussions, and learned from their peers through panel presentations. Missed the event? View the recordings from BreatheCon 2025 (Spanish recordings) on the CF Foundation’s YouTube channel!
|
| |
Celebrations in the Month of April
|
|
|
National Donate Life Month
We are proud to recognize April as National Donate Life Month. We invite you to use the month to raise awareness about the importance of organ, eye, and tissue donation and transplantation while honoring those who have already saved countless lives through their donation. Join us in celebrating the significance of organ donation and how it impacts peoples’ lives this month and beyond. And if you have not already done so, register as an organ donor today.
|
|
|
Over the coming weeks, Community Voice will share opportunities to participate in projects related to sexual and reproductive, clinical research planning, and more.
|
|
|
Sharing Insights & Experiences Through the CF Community Blog
|
|
|
Check out these recent blog posts by Community Voice members! Community Voice currently has 200 members who have written 437 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.
|
|
|
|
