Community Voice: Monthly Results Update
March 2024 Edition
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Dear Community Voice Member,
Welcome to the March 2024 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 video on Health Equity in Cystic Fibrosis
Sharing our Community Voice Year in Review 2023
Update from the Financial Wellness Advisory Committee
Update from PRIDE CF Brainstorming Project
Recap and recordings from BreatheCon 2024
Recording from the Genetic Therapies Webinar
Survey opportunity on extending time between routine CF clinic visits
All Community Voice projects undergo our vetting process to ensure they have a positive, clear impact on the CF community and aim to engage as many diverse voices as possible. While some projects may take time to provide results or an outcome, they are always shared here. If you would like to read about past projects, browse previous editions.
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New Video: Health Equity in Cystic Fibrosis
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We are excited to share a new CF Foundation video on health equity in CF. Health equity occurs when everyone has fair and just opportunities to have optimal health outcomes. This project was driven by the stories of Community Voice members and others in the CF community who shared their experiences within the CF community and healthcare system. Thanks to their efforts, the resulting video is being used to raise awareness that CF can occur in all races and ethnicities, and as a step towards addressing health inequities in the CF community.
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We are deeply grateful to Community Voice members Tanisha Cunningham for sharing her story, and Annette Perry for her support and review of the video. We also thank Dr. Jennifer Taylor Cousar, co-director of the Adult CF program at National Jewish Health in Denver, for her work on the video.
Please take a few minutes to watch the video and share it widely with your community. By better understanding the need for health equity, we can work together to ensure all people with CF have the chance to receive the best possible outcomes.
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Community Voice Year in Review 2023
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Another year in the books, and Community Voice members continue to have a huge impact.
In 2023, Community Voice members like you took part in more than 50 projects to inform and improve CF research and care. Thanks to you, the CF Foundation and researchers across the United States continue to gain momentum towards a cure and better quality of life for all people living with CF.
In case you missed it, please check out the Community Voice: Year in Review report below, which covers topics like Community Voice program growth, impact on health equity, testimonials from CF Foundation staff and researchers, and a sneak peek at the priorities and opportunities ahead for Community Voice in 2024.
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Additionally, for the first time, the Community Voice report includes an appendix listing all research, care, and other projects that Community Voice members contributed to! Thank you for being an essential partner in our shared mission to help provide all people with CF the opportunity to lead long, fulfilling lives. We look forward to another impactful year ahead!
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Financial Wellness Advisory Committee - Update
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The aim of the CF Foundation’s Financial Wellness Advisory Committee (FW-AC) is to shape further exploration of financial wellness in ways that are relevant to people with CF and their loved ones. Six Community Voice members joined the new committee in 2023. Since then, they have worked to define financial wellness; identify key points of transition within the CF journey where financial wellness can be especially impacted; and highlight CF-related considerations when it comes to managing current needs for money, coping with unexpected costs, and planning for the future in order to thrive.
Want to share your experiences with the costs of living with CF?
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PRIDE CF Brainstorming Project - Update
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The impact of having a chronic condition like cystic fibrosis and being a member of the LGBTQIA+ community on health outcomes is unknown. PRIDE CF is a CF Foundation-funded Health Equity Team Science Initiative comprised of three projects with the unified goal of better understanding how being a member of the LGBTQIA+ community interplays with having CF.
The PRIDE CF Concept Mapping Study aims to use an online brainstorming activity, followed by a focus group discussion to explore the health care utilization and needs of LGBTQIA+ people with CF. Data collection launched in January 2024 with help from Community Voice. Community members and providers brainstormed statements to address the prompt, "Things that people should know about the experiences of LGBTQIA+ people with CF are..."
Ultimately, results from this study will inform the development and testing of interventions and materials with the hope of improving health for LGBTQIA+ people with CF. The research team would like to thank Community Voice members for participating in concept mapping and their stakeholders for providing invaluable feedback throughout the design and implementation of this study.
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BreatheCon 2024 Recap and Recordings
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A sincere thank you to the Community Voice members and other community members who supported this year’s BreatheCon on February 9-10. BreatheCon is a unique event to virtually gather in a welcoming, inclusive space where adults with CF can find camaraderie with others. This year’s BreatheCon was attended by 231 adults with CF who got to know each other through virtual social chats and happy hours, shared their experiences in small group discussions, and learned from their peers through panel presentations. You can catch recordings from 2024 BreatheCon now on YouTube, including sessions on mental health, parenting with CF, thriving at work with CF, and more.
Thanks to the 32 Community Voice members who played a leading role in developing, shaping, and hosting the two-day event!
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Genetic Therapies Webinar Recording
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On February 21, the CF Foundation hosted a webinar about the basics of genetic therapies on CF. During the presentation, CF Foundation staff covered how CFTR gene mutations cause CF and why only certain mutations respond to modulators. They also explained how gene editing and RNA therapy would work for CF, including the realistic timeframes for when genetic therapies may be available to people with CF. Clinical trial navigator Katie Howe discussed how people with CF can get involved with genetic therapy research. A recording of the webinar is, including a list of topics covered by timestamp in the video’s description.
We thank Community Voice member Medora Frei for moderating the event!
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Celebrations in the Month of April
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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 while honoring those who have already saved countless lives through their gift of donation. Join us in celebrating the importance of organ donation and how it impacts peoples’ lives this month and beyond.
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UPCOMING OPPORTUNITIES & OPEN OPPORTUNITIES
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Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences including applying to join the Adult Advisory Council, a focus group on young adult financial wellness, or submitting public comments on the CF Care Model.
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How does the cost of CF affect you? Survey
Researchers at the University of Texas Southwestern at Dallas would like to better understand CF community perspectives about the amount of time between routine CF clinic visits. They are conducting an online survey of people with CF and clinicians to understand opinions on the subject. Adults with CF are invited to participate in the survey to share what factors make them more or less comfortable extending the time between CF clinic visits. The survey will remain open through May 15, 2024. Please note this is an external opportunity hosted beyond the CF Foundation.
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Sharing Insights & Experiences Through the CF Community Blog
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Check out this recent blog post by a Community Voice member! Community Voice currently has 180 members who have written 401 posts since the CF Community Blog launched.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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