Community Voice: Monthly Results Update
June 2026 Edition
|
|
|
|
Dear Community Voice Member,
Welcome to the June 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
- New members of the TDN Protocol Review Committee
-
CF Foundation’s new Priority Clinical Studies Tracker
- A video on Financial Impacts of Life with CF
- An upcoming
CF Circle on The Black CF Experience: Adults, Parents, and Caregivers
If you would like to read about past projects, browse previous editions.
|
| |
|
Community Voices Help Shape CF Research
|
|
|
|
The Cystic Fibrosis Therapeutics Development Network (TDN) is the largest CF clinical trials network in the world, bringing together experts from across the United States to evaluate the safety and effectiveness of new CF therapies through clinical studies. Each study plan, or “protocol,” is reviewed by the TDN’s Protocol Review Committee (PRC), which includes experienced CF physician investigators, research coordinators, people with CF, and other specialists. The review process makes sure studies meet the highest standards of safety and quality.
|
|
| |
|
In May, the PRC welcomed nine new community members (pictured above, plus Jennifer Cogliano and another Community Voice member). These community members will provide feedback on each study’s feasibility and relevance to people with CF, based on their lived experiences and their observation of other people’s experiences in the CF community. This feedback helps inform whether and how studies happen within the TDN.
We thank these community members for sharing their time and expertise and look forward to sharing more about upcoming research projects!
|
|
|
|
New Priority Clinical Studies Tracker Available
|
|
|
|
The CF Foundation supports a wide range of research to address the complex needs of people with CF, from working with industry partners to develop new therapies to funding academic researchers at universities and hospitals who are focused on addressing key topics in CF treatment and care. To help keep community members informed about the status and progress of these academic studies, the Foundation has developed a Priority Clinical Studies tracker, which provides at-a-glance status updates as well as descriptions of the studies’ goals and progress, and links to the Clinical Trial Finder for more detailed information about each study.
Six Community Voice members shared their input on the tracker’s development, including what information was important to include and specific wording to make it easier to understand and use. The tracker will be updated twice a year and will be available to care teams, chapters, and on cff.org.
|
|
|
|
Video: Financial Impacts of Life with CF, including CF Community Experiences
|
|
|
|
Hear from people living with CF and caregivers about the short- and long-term financial impacts of life with cystic fibrosis in the CF Foundation’s latest Navigating CF video. The video features both data and quotes about costs of care, financial tradeoffs, and how people navigate them. Thank you to the many Community Voice members who participated in the CF Foundation’s COST-CF survey and the “Trust and Equity in Cystic Fibrosis” interviews led by researchers at the University of Wisconsin-Madison and See What I Mean. Your participation in these projects helps further our understanding of the daily challenges of life with CF and supports the creation of resources such as this video for the entire CF community.
|
|
|
|
CF Circle: The Black CF Experience: Adults, Parents, and Caregivers
|
|
|
|
Join this peer-led CF Circle focused on the Black CF experience on Tuesday, June 23 at 7 p.m. ET. The virtual small-group discussion will offer an opportunity for Black adults with CF, as well as parents and caregivers of Black individuals with CF, to connect with peers around a shared experience. There is no formal agenda for CF Circles, but discussion topics may include misdiagnosis or delays in treatment, self-advocacy in medical settings, and practical strategies to manage life with CF.
|
|
|
|
LGBTQIA+ PRIDE Month
We are delighted to recognize June as Pride Month! This month is a time to honor the legacy, contributions, and accomplishments of the LGBTQIA+ community. Join us in using this month to celebrate the array of backgrounds and experiences within the CF community and to help build a community where everyone feels welcome and included.
|
|
|
|
Interviews: Assisted Reproductive Technology
Researchers at the University of Pittsburgh Medical Center are conducting 60-minute virtual interviews with partners of men with CF who have used or seriously considered using assisted reproductive technology (ART). This study aims to learn more about partners’ experiences and perspectives as they considered or pursued ART and better understand what resources and support partners need as they consider family building options.
You are eligible for this opportunity if you:
- Were assigned female at birth
- Are 18 or older
- Are the partner of a man with CF
-
Have used or considered using ART to build your family
Complete the interest form linked below by June 14. Partners who complete an interview will be eligible to receive a $50 gift card for their time.
|
|
|
|
Survey: Pregnancy, Digestive System Symptoms, and Nutrition
To better understand nutritional needs during pregnancy, researchers from the University of Texas Southwestern are surveying
adults with CF who have been pregnant between 2019-today about their experiences with digestive system symptoms and nutrition during pregnancy. They invite those who qualify to take an anonymous 20-minute survey by June 9.
|
|
|
|
This summer, watch for Community Voice opportunities to provide input on the CF Community Blog, which North American Cystic Fibrosis Conference (NACFC) sessions are livestreamed, and more!
|
|
|
|
Sharing Insights & Experiences Through the CF Community Blog
|
|
|
|
Check out these recent blog posts by Community Voice members! Community Voice currently has 230 members who have written 484 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.
|
|
|
|
|
