Community Voice: Monthly Results Update
January 2023 Edition
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Dear Community Voice Member,
Welcome to the January 2023 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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BreatheCon 2023 Co-Chair and Program Planning Committee
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The seventh annual BreatheCon will be held next month on February 23rd-25th and registration is now open. This free, online event is designed by and for adults with cystic fibrosis to provide a safe virtual space to share, connect, and learn from others through open and honest conversation. The Community Conferences team partnered with Community Voice to send out a request for two co-chairs and ten-fifteen adults with CF to become members of the BreatheCon 2023 program planning committee (PPC). We would like to thank the co-chairs of this event, Danielle Nicosia and one other community member for their work in this role. We would also like to thank the four Community Voice members below and six other community members for their work in planning this event.
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Danielle Nicosia (Co-Chair)
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Anne Koehlinger (PPC Member)
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| Leah Schwanke (PPC Member)
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Martha Garvey (PPC Member)
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| Brandon Wright (PPC Member)
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Genetic Therapies Working Group: Handouts Now Live
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A previous update made in September 2022 mentioned a plethora of new educational materials from the Genetic Therapies Working Group. As a reminder, focus groups and offline feedback from Community Voice members played an integral part in creating these tools to aid in educating the CF community on genetic therapies. We are excited to announce that these materials are now live and include a glossary of key terms related to genetic therapies, an Understanding Genetic Therapies infographic, and a Questions to Ask Before Enrolling in a Clinical Trial resource. We would like to thank everyone who helped participate in the development of these materials.
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Celebrating Black History Month
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Next month, Community Voice is proudly recognizing February as Black History Month. We invite you to use the month to recognize and celebrate the diversity within the CF community. The CF Community Blog is actively looking to share a range of experiences from Black people living with CF. For those who are interested in sharing their CF story to a broad audience, the blog is a great way to raise awareness about your unique lived experience, share uplifting messages or tips with other members of the CF community, and bring attention to topics that interest you. We encourage you to fill out the CF Community Blog interest form if you're interested in being considered for this opportunity!
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New Spanish Resource - Spanish Video Playlist
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To make it easier to find video resources in Spanish, we’ve gathered existing Spanish-language videos into a YouTube playlist: “Fundación de Fibrosis Quística (CFF) | En español.” This playlist includes a variety of educational content, including the “Intro to CF” video series and recordings from virtual events like ResearchCon. We will continue to update this playlist as new videos become available.
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2023 END OF YEAR COMMUNITY VOICE SURVEY
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Community Voice: 2022 End of Year Survey
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Continuing from previous years, we conducted an annual survey to gather feedback about your experiences as a Community Voice member and how to improve. These insights will be used to shape our areas of focus throughout 2023, including member engagement, recognition, and outreach. We would like to thank the 97 members who participated in the survey and provided their invaluable feedback.
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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 a physical activity Mobile app, GI experience, 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 159 members who have written 365 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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