Community Voice: Monthly Results Update
April 2024 Edition
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Dear Community Voice Member,
Welcome to the April 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:
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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Community Voice Milestone: 2,000 Voices Strong
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We are excited to announce that during the month of April we reached 2,000+ Community Voice members! A sincere thank you to all 2,031 of you for participating in this program and sharing your unique perspectives with the CF Foundation to help drive research, care, and programs. This is a great milestone for the program to reach as we head into our 10-year anniversary later this year. We appreciate you all for your continued support and engagement with this program.
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CF Growth Trajectory Chart Informed by Focus Group
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Researchers seeking to improve clinic discussions on growth trajectories in children with CF created a draft infographic to better explain the different growth charts that may be used during clinic visits. Four Community Voice members – all parents of children with CF – participated in an April 2023 focus group to share their reactions and feedback to the draft infographic with a clinician from the Children’s Hospital of Philadelphia. The researchers are happy to share that the final infographic is now complete and will now be used during clinic visits. We would like to thank the following Community Voice members Michelle Bowers, Katherine Clark, Jamie Rudnycky, and Noah Singer for joining the focus group and providing feedback to make this infographic possible.
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Strong Community Interest in Trust Research Interviews
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Researchers from the University of Wisconsin partnered with Community Voice in early 2024 to recruit adults with CF and parents/caregivers of children under 18 with CF to participate in interviews to explore trust and mistrust in CF care. Their goal is to better understand health experiences and trust dynamics within the CF community, and to identify actionable strategies and ideas from the community to build partnerships and trust between the CF community and care teams.
Over 90 Community Voice members responded to the recruitment, demonstrating strong community interest in the topic. The Trust Research team are thrilled at the robust response and have started contacting those who expressed interest. They plan to interview individuals in waves of 15 interviews at a time over the coming weeks. We look forward to sharing updates on the initial findings of the interviews on this important subject as they progress.
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Menstrual Cycle Study Publication
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Celebrations in the Month of May
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Asian American, and Pacific Islander Heritage Month
Community Voice is proud to recognize Asian American, and Pacific Islander (AAPI) Heritage Month throughout May. Join us in celebrating the contributions, achievements, and diversity of the AAPI CF community through connecting with resources that deepen your understanding of their experiences.
Cystic Fibrosis Awareness Month
May is Cystic Fibrosis Awareness Month, which is dedicated to coming together to recognize and honor the CF community. One way you can participate is by sharing your own experiences with others online. Check out the CF Foundation’s Cystic Fibrosis Awareness Month resources, including images you can use on social media.
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UPCOMING OPPORTUNITIES & OPEN OPPORTUNITIES
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Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences including a focus group on potentially reducing airway clearance treatment in younger children with CF, a survey on attitudes towards various CF medications and vaccines, and more!
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The Prevalence, Severity & Measurement of Pain in Cystic Fibrosis - a Survey Pilot Study
Researchers in Australia are engaging the global CF community through an anonymous survey to explore the characteristics of pain in the CF community. If you are interested in participating, you can take the survey here or click the button below. This survey opportunity is hosted by Southern Cross University in Australia and will be open until December 2024.
Please note this survey is not hosted by the CF Foundation. If you have any questions, please email researcher Anastasia Ward at Southern Cross University.
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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 183 members who have written 408 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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