Community Voice: Monthly Results Update
June 2023 Edition
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Dear Community Voice Member,
Welcome to the June 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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Publication Announcement: Nutrition Position Paper
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In March 2022, the CF Foundation solicited feedback from the CF community to develop a white paper on cystic fibrosis nutrition. A small multidisciplinary committee comprised of adult and pediatric physicians, dietitians, a psychologist, social worker, people with CF, and representatives from CFF were brought together to develop the white paper, with the goal of identifying best practices on nutrition-related topics where there is a high
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need for guidance. Community Voice distributed a nutrition survey to community members who weighed in, helping the committee better understand current practices and high priority questions around CF nutrition. The committee used the survey results to inform and finalize the scope and development of the white paper to improve the nutritional management of people with CF. A year later, we are pleased to announce that the recently published article, “Nutritional considerations for a new era: A CF Foundation position paper,” is now available in the Journal of Cystic Fibrosis. This publication provides interim advice and considerations to the CF community around CF nutrition in the current era. Thank you to every Community Voice member who helped inform these nutritional considerations, whether it was through survey participation or by providing additional feedback on the draft manuscript.
Learn more about the CF Foundation’s clinical care guidelines and the guideline development process.
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CF Adult Advisory Council
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We are pleased to announce the newest members of the CF Adult Advisory Council (AAC)! This council is a rotating group of adults with CF who lend their voices to convey the hopes, needs, and aspirations of the CF adult community by tapping into their strengths and expertise of other community members. These adult volunteer leaders will continue to serve as reviewers for Impact Grants and provide timely feedback on a variety of projects, including better ways the CF Foundation can partner with people with CF in key programs and events, such as the Volunteer Leadership Conference. General members serve a two-year term. We would like to congratulate new AAC Chair Chad Riedy who will serve on the council for a three-year term.
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ENT Olfactory Survey - Update
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Researchers from the University of California, Los Angeles partnered with the Community Voice team to conduct a survey on loss of sense of smell, also known as olfactory dysfunction. Survey results demonstrated that problems with smell function are very common, and that sense of smell is an important issue for many people with CF. Findings also demonstrated that people with CF are enthusiastic about further research on this topic and about participating in these studies. Through these results, researchers will be able to hone future projects to study and improve loss of sense of smell in people with CF. The study team is very grateful to the individuals who completed the survey and provided their perspective on this topic!
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Autoimmune Survey - Update
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Collaborating researchers from multiple institutions conducted a survey to examine the prevalence of manifestations of autoimmune disease within the CF community. The survey’s audience included people with CF (PwCF), as well as caregivers/family members of PwCF, and inquired about any autoimmune diagnoses or symptoms, such as arthritis, rash, or unusual gastrointestinal symptoms, that could suggest an autoimmune disease. The goal of this survey was to understand symptoms in PwCF and to gain community insights into the experiences of PwCF who have been diagnosed with autoimmune disease in hopes that the knowledge gained from this survey could influence CF clinical care by increasing CF care teams’ awareness of autoimmune disease in CF and even inform research in the future. We would like to thank the Community Voice members for assisting with this project and providing such great support.
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UPCOMING & OPEN OPPORTUNITIES
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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 medical traumatic stress, perspectives regarding inhaled antibiotic therapy, 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 163 members who have written 376 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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