Community Voice: Monthly Results Update
October 2024 Edition
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Dear Community Voice Member,
Welcome to the October 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 Guidance on the CF Care Model and Care Teams
- Health Equity Team Science Award Community Grant Reviewers
- Medical Traumatic Stress in Children Advisory Committee
- Upcoming NACFC Highlights Webinar
- Annual Community Voice Spotlight Week
If you would like to read about past projects, browse previous editions.
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New Guidance on the CF Care Model and Care Teams
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In partnership with the CF community and clinicians, the CF Foundation updated guidance on how and when routine care is provided, and the structure of CF care teams. The updates recognize the diversity of experiences and needs that exist within the CF community and encourage care teams and families to work together to adapt their care to support individual priorities and well-being.
The CF community informed the new guidance through:
These updates are described in two position papers presented at the North American Cystic Fibrosis Conference (NACFC) and published in the Journal of Cystic Fibrosis in September 2024:
These position papers are guidance (not rules) and may not be implemented right away by each individual care team, as teams take time to understand and implement the guidance. Resources and other local factors will impact what options each care team is able to provide and when. The CF Foundation will continue to support care teams with tools to adapt care to meet the changing needs of people with CF over time.
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Health Equity Team Science Award (HETSA) Community Grant Reviewers
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Demonstrating strong community interest in the CF Foundation’s health equity work, 68 community members applied for positions as HETSA community grant reviewers. Reviewers draw on their own lived experiences and observed community-wide experiences to provide patient perspectives, share community research priorities, and identify possible barriers to community participation in clinical research projects aimed at improving health equity for people living with CF. They will support reviews of and decision-making for proposals related to social determinants of health, mental health, pollution, and sex differences. We are grateful for the ten community members (four not pictured) who will provide their expertise in 2024-2025!
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Medical Traumatic Stress in Children Advisory Committee
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In 2023, Community Voice recruited 4 parents of children with CF for a committee to advise on research into how to address medical traumatic stress in children with CF, including development of the guide used for community interviews. Parents have provided valuable input on what language to use in asking youth and parents about the emotional aspects of CF, particularly those experiences that may cause anxiety or trauma reactions, to better understand what the CF community needs to support their mental health. The information learned through these interviews will be used to develop strategies to get families support sooner and prevent medical trauma.
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“Our Community Voice participants have been very open with their experiences with a goal of helping others – even when sharing their own experiences may be difficult. We can’t say enough about how much we appreciate their willingness to share their challenges and successes to help others.”
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– Meghan L. Marsac, PhD, University of Kentucky College of Medicine
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As interviews are completed, the parents on the committee will also help researchers to summarize themes and provide input on suggested ways to reduce medical traumatic stress in children with CF. Researchers at the University of Kentucky College of Medicine and Children’s Hospital of Philadelphia truly appreciate their community partners’ participation in this project. Thank you to the four (three not pictured) CF community members for supporting this committee!
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Researchers and clinicians gather every year at the North American Cystic Fibrosis Conference (NACFC) to discuss the latest developments in cystic fibrosis research and care. If you or a loved one has CF, we invite you to join us November 12 at 7:00 p.m. ET to learn about these developments at the NACFC Highlights Webinar, which will include an option to listen to a live Spanish translation. The webinar will include a Q&A opportunity with CF researchers. Can’t attend live? Register below to receive a recording after the event.
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Get caught up on NACFC 2024 by watching the session recordings on the CF Foundation’s official YouTube channel. The content includes the plenary sessions, symposia, workshops and many discipline group and lunch & learn sessions.
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Community Voice Spotlight Week
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This November, we look forward to spotlighting Community Voice from November 18-22, 2024! During this time, you’ll see Community Voice highlighted in various avenues such as the CF Foundation website and social media accounts – including messages of gratitude from researchers and clinicians who will be highlighting the impact Community Voice members have had on CF research and care!
We invite you to join the celebration by sharing your own experiences with the program. Please check out our Community Voice Outreach Guide for tips on how to share your story and help new people find and connect with Community Voice!
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Celebrations in the Month of October
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Native American Heritage Month
Community Voice is proud to recognize Native American Heritage Month and celebrate the legacy, achievements, and contributions of Native/Indigenous Americans in their workplaces, and communities. Take this opportunity to appreciate and learn about the diverse cultures that make up the Indigenous CF community and Community Voice membership.
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Keep an eye out for upcoming opportunities in the next few weeks to share your experiences by:
- Joining the PRIDE CF study to better incorporate LGBTQIA+ experiences into improving routine CF care
- Participating in a focus group related to CF carrier use of modulators during pregnancy
- Sharing feedback on the Community Voice program through our annual survey
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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 191 members who have written 424 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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