Community Voice: Monthly Results Update
November 2023 Edition
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Dear Community Voice Member,
Welcome to the November 2023 edition of the Monthly Results Updates!
In these digests, we share the impact Community Voice members are making through participation in recent opportunities.
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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CF Liver Disease Guidelines
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In 2020, as the need for liver screenings in patients with CF was increasingly being recognized, the CF Foundation established the CF Liver Disease Guidelines Committee to help develop new clinical care guidelines for individuals with liver, biliary, and gallbladder issues. In order to inform the guidelines, the CF Foundation conducted an anonymous survey for individuals to share their experiences with and practice patterns around liver, biliary, and gallbladder disease. The results of this survey informed the committee’s recommendation statements for public comment. We are pleased to announce that the resulting article,
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Mental Health Working Group
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The Prioritizing Research in Mental Health (PRIME) Work Group (formerly known as the Mental Health Research Work Group) held its first strategic planning meeting on October 19-20, 2023 with a focus on Trikafta (elexacaftor/tezacaftor/ivacaftor, or ETI) and mental health clinical research. Community Voice members Kasey Raffensperger, Kyle Traver, and Katie Kirby joined the work group and met with researchers to discuss existing research on mental health and ETI, identify gaps in CF-related mental health research, and identify priority research questions. Community members presented on qualitative data themes related to mental health and ETI from the 2020 CF Foundation Community Mental Health Research Prioritization Survey. In discussions, they shared their perspectives on the effects of modulators on both physiological and psychological health and their experiences with other mental health topics. They also provided ideas for future community member engagement in mental health research. Going forward, the PRIME Work Group will continue to meet virtually and develop plans for future grant applications related to CF and mental health based on research questions identified during this meeting. While this particular meeting was focused on mental health and ETI, the CF Foundation remains committed to pursuing research that also helps people with CF who do not benefit from modulators.
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CF Community Blog Survey - Update
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The CF Community Blog is a platform to share experiences, reflections, and stories from across the CF community, with topics ranging from mental health and relationships to CF care and self-advocacy. To shape the direction of the blog and ensure it is best serving the community, all Community Voice members and those who have written for the blog were invited to complete the CF Foundation Community Blog Survey. The survey received 137 responses — including 89 from Community Voice members — and will help inform future topics, the types of authors you hear from, and how the blog is shared with the community. We would like to thank everyone who participated in this survey!
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UPCOMING & OPEN OPPORTUNITIES
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Webinar for the Community - Highlights from NACFC
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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 December 5 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 cover the latest research and care news from NACFC and include a Q&A opportunity with CF researchers. Can’t attend live? Register below and you will be sent a recording after the event. You can also sign up below to receive information about future events and resources in Spanish.
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Recordings for NACFC are available now to view!
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Adapting CF Care Survey - Open Now!
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In case you missed it, the Adapting CF Care survey is still open for your feedback! We know that many living with CF are experiencing significant changes in their health. As some live longer, their needs are changing and may become increasingly complex. For others, their health may not have changed dramatically, so the care they receive may need to be sustained.
To understand how the care that is provided at the care centers the Foundation accredits across the country can better meet these needs, we are asking people with CF, their families, and care team members to complete the survey below.
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Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences on topics such as trust dynamics in CF care settings, feedback on your experience with the Community Voice program in 2023, and more.
In the meantime, participate in some open opportunities today!
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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 174 members who have written 391 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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