Community Voice: Monthly Results Update
September 2023 Edition
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Dear Community Voice Member,
Welcome to the September 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.
This October, we look forward to spotlighting Community Voice from October 15-21, 2023! During this time, you’ll see Community Voice highlighted on the Foundation website and social media accounts, and we invite you to join the celebration by sharing your own experiences with the program. Watch your inbox for a special Community Voice outreach guide with tips and suggestions for how you can help spread the word!
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Community Voice Experiences Video
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Community Voice is always looking to grow our membership to ensure we have a representative and diverse community informing decision-making around research, care, and programming. As part of our efforts to reach new populations, we recruited six Community Voice members this summer to participate in a video to showcase their experiences and how their partnership has made an impact. This video will be used to raise awareness of Community Voice and to encourage members of the CF community and their families to join. Please feel free to share this video with people in your networks who may be a great fit for the program, especially other people with CF or parents of people with CF. We would like to thank Anthony McDaniel, David Hansen, Jennifer Kyle, Melody Chaney, Michelle Bowers, and Raeshaun Jones for participating in the video, sharing their experiences, and making this video possible.
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CF Peer Connect Mentors For Adults Who Were Diagnosed Late
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CF Peer Connect is a one-to-one peer support program for people with CF and their family members ages 16 and older. The program has recently experienced an increase in connection requests from adults with CF over the age of 40 who were diagnosed late/as adults, so the CF Peer Connect team partnered with Community Voice to recruit new peer support volunteers for the program. Community Voice sent out a quick survey to invite people to self-identify as diagnosed late and to set up a welcome call with a CF Peer Connect staff member. Through this partnership, ten new community members with different health statuses and paths to their CF diagnosis joined CF Peer Connect. These new members will allow for more timely personalized connections. We would like to thank the Community Voice members who were willing to share their experiences and empathetically listen to those seeking peer support.
Learn more about CF Peer Connect or request peer support.
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Outpatient Antibiotic Treatment Strategies for Pediatric Pulmonary Exacerbations (STOP PEDS) Results - Update
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Researchers held focus groups with members of Community Voice who are parents of children with CF. The purpose of the focus groups was to inform clinical trial design as part of the STOP PEDS work. Parents' perspectives were gathered on how they feel about the need for antibiotics to treat pulmonary exacerbations in their children and how the clinical trial could be designed to ensure families felt comfortable enrolling in it.
The pilot clinical trial informed by the focus groups analyzed the timing of antibiotics in outpatient treatments of pulmonary exacerbations. The clinical trial results showed that tailored therapy – consisting of increased airway clearance alone, with antibiotics added only in certain instances – may reduce the need to use antibiotics. The study also demonstrated that it is possible to conduct randomized clinical trials looking at oral antibiotics treatment strategies for mild pulmonary exacerbations in children with CF.
CF community input played an important role in supporting the design of this successful trial, with the feedback shared through focus groups directly informing criteria for when antibiotic treatments would be given during the study. We again thank the Community Voice parents who participated in the focus groups, and look forward to seeing the continued impact of your insights on this area of work!
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In the Month of September We Celebrated -
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Community Voice is proud to recognize September 15 through October 15 as Hispanic Heritage Month and celebrate the legacy, contributions, and achievements of the Hispanic community. This celebration highlights the rich diversity of the Hispanic CF community and Community Voice membership.
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UPCOMING & OPEN OPPORTUNITIES
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The North American Cystic Fibrosis Conference (NACFC) is back November 2-4, and registration is now open for the free virtual experience. Participants will have the opportunity to partake in question-and-answer sessions alongside the in-person audience during livestreamed symposia. Register below if you want to hear the latest advances in cystic fibrosis research, drug development, and care across three plenaries, as well as six sessions that were pre-selected by members of the CF Foundation’s Adult Advisory Council (AAC).
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CFRD Small Discussion Group
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The following opportunity is for adults with CF who have CFRD or are pre-diabetic.
Cystic fibrosis-related diabetes (CFRD) is a unique type of diabetes that is common in people with CF. Join other adults with CF for a small group discussion to connect, share, and learn with others who are managing a pre-diabetes or CFRD diagnosis. This discussion will be facilitated by adults with CF who also have CFRD. The CFRD discussion will be a 75-minute session on Thursday, October 5 at 7 p.m. ET.
Discussions will be peer-led with CF Foundation staff present during the conversations. Please note this is not a support group facilitated by a mental health professional.
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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 sexual reproductive health in males, prenatal and preconception genetic counseling, 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 169 members who have written 384 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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