Community Voice: Monthly Results Update
December 2022 Edition
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Dear Community Voice Member,
Welcome to the December 2022 edition of the Monthly Results Updates!
In these digests, you will learn about the impact Community Voice members are making through participation in recent opportunities. A friendly reminder that 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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NACFC Program Planning Committee
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In October, the CF Foundation sought after an adult with CF to join the North American CF Conference’s (NACFC) Program Planning Committee for a five-year term. The goal of this committee is to organize and aid in the development of educational content for the NACFC audience, recruit faculty to present, and help manage the structure and evolution of the conference. Community Voice sent the request out to adults with CF and, after receiving 10 applicants, we are pleased to announce the selection of Community Voice member Molly Pam, who will serve in this role for a five-year term.
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University of Pennsylvania Well-Being Survey
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In April, a survey was sent out as part of a research study to further understand well-being in the cystic fibrosis community. The study was held by a post-doctoral fellow from the University of Pennsylvania’s Positive Psychology Center and KC White, Board Chair of the CF Foundation, graduate student, and adult living with CF. The research project explores the relationship between peoples’ experiences with CF and their general perception of the world, including topics such as health, personality, and beliefs about the world around you. Learn more about this study by viewing the takeaways below:
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Many thanks to the Community Voice members who participated in this survey and provided their thoughtful feedback.
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How Community Voice Vets Projects
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When it comes to Community Voice projects, our team evaluates each request to determine if it meets our criteria. Our process ensures that the projects we share are both meaningful and impactful for the CF Community. Listed below are some questions we ask/use during the vetting process:
- Does the project consider the community’s needs and sensitivities?
- Does the project fit the mission of the CF Foundation?
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Is this project gathering new information?
- Is the project requestor valuing the insight of the community to move their knowledge further to support the community?
- Is there a plan to share the results with the community?
These are just some questions we may ask when requestors are looking to partner with Community Voice for a project. If you have any questions about our process, please feel free to email the Community Voice team at communityvoice@cff.org.
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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 an ENT olfactory survey, SDOH in clinic, medical traumatic stress, and more. In the meantime, check out open opportunities to participate in today!
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Sharing Insights & Experiences Through the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 158 members who have written 363 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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