Community Voice: Monthly Results Update
July 2023 Edition
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Dear Community Voice Member,
Welcome to the July 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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Physical Activity Mobile App Development Committee - Update
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Physical activity has been shown to improve mental health, sleep, lung function, and quality of life for those with cystic fibrosis. Researchers from the University of Florida and Kansas University connected with Community Voice to recruit members to aid in the overall goal of creating a mobile health platform that helps adolescents and young adults with CF to be active via delivering adaptive and tailored intervention content. Members of this project collaborate with other individuals with CF to provide iterative feedback on the development of the mobile health platform. We would like to congratulate Community Voice member Emily Apakian for her continued work on this committee, where her role includes reviewing intervention content (e.g., intervention messages, videos) to ensure that it is the best possible fit for adolescents and young adults with CF. Please be on the lookout for more details on this project in future editions.
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Community Conference Recruitments
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Thank you to our recent NextBreath 2023 Community Conferences co-chairs, and we are pleased to announce new co-chairs and planning committee members for the upcoming BreatheCon 2024 and ResearchCon 2024 conferences.
NextBreath (June 2023)
NextBreath is a free, online, two-day event for individuals with cystic fibrosis who are living with established lung disease, experiencing lung health complications, or have had a lung transplant, as well as their family members and caregivers. We would like to congratulate and thank co-chairs Ashley Locke and Ella Balasa for their contributions to this conference! Recordings of the event are now live to view at your own pace.
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BreatheCon (February 2024)
BreatheCon is a free, online, community conference to gather with other adults with cystic fibrosis. The CF Foundation’s Community Conferences team partnered with Community Voice to recruit adults with CF to serve as co-chairs and members of the 2024 program planning committee. We are pleased to announce Leah Schwanke and Rachael Russell as the co-chairs of this upcoming event in February 2024. A big thank you also to the eight Community Voice members below and six other community members for joining the BreatheCon planning committee!
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From top left: Leah Schwanke (Co-Chair), Rachael Russell (Co-Chair), Schyler Kline, Caleigh Haber-Takayama, Brandon Wright, Nicole Kowal, Ashley Locke, Tanisha Cunningham, Eric Goldberg, and Beth Maurer (not pictured).
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ResearchCon (Spring 2024)
ResearchCon is a free, online event for the entire CF community to learn and discuss CF-related science, research, and care alongside others living with and studying the disease. The next iteration will be held in late April or early May 2024. The Community Conferences team again partnered with Community Voice to recruit a volunteer to co-chair the event alongside a CF clinician and/or researcher. We are pleased to announce Art Brace and Chyann Hoyle as the community co-chairs of this event! They will partner with Shine-Ann Pai, BSRC, RRT to plan ResearchCon 2024.
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CF Foundation Next Generation Patient Registry Project
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In May, the CF Foundation recruited community members to participate in the vendor review and selection process for the next version of the Patient Registry. Since then, community members have reviewed and provided feedback on the Request for Proposals before they were sent out to vendors in early July. They will also attend vendor demonstrations of the new registry platforms this fall and will review patient-specific sections of the proposals and the functionality of the platforms. The Next Generation Patient Registry project team will solicit wider input from the CF community around health data management as development progresses in the coming years – stay tuned to Community Voice for future opportunities in this space. We’d like to recognize the Community Voice members below for their participation in the vendor selection and review process!
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From top left: Jacquelyn Sjoberg, Donald Kreis, Stefanie Deuber, Sharon Castillo (not pictured), and Seth Reno (not pictured).
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Compass Resource Database Testing
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In March, the CF Foundation solicited feedback from 10 community members who tested the Compass Resource Database, a new self-service tool to help people with CF and care team members find support resources. Testers reviewed the database user guide, completed an offline questionnaire, and submitted their feedback to Compass leaders. The feedback was incredibly valuable, and Compass leaders are now working to incorporate those insights into the next iteration of the database. We would like to give a special thank you to Community Voice members Kristina Robinson, Angel Newman, Danielle Nicosia-Baker, Katie Croon, Carrie Arps, Karen Hebeler, David Ingram, Diane Radlowski, Madelyn Frank, and Jaime Galloway for their participation! We look forward to sharing this new tool once it’s published on CFF.org this fall.
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Superbugs: Speaking to Congress about CF and Antimicrobial Resistance
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In case you missed it, Melanie Lawrence, an adult living with cystic fibrosis was testified before the Senate Health, Education, Labor and Pensions (HELP) Subcommittee on Primary Health and Retirement Security during a July 11 hearing on “Superbugs: The Impact of Antimicrobial Resistance on Modern Medicine.” Melanie’s statement and the video recording are available on the subcommittee’s website, with Melanie’s testimony starting at the 40-minute mark. This is just one of the many ways that Community Voice members make a difference, and we are very proud to hear her speak on such an important topic to the CF community. Visit the CF Foundation's "Get Involved" page to learn more, or you can sign up for Advocacy Action Alerts.
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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, therapy initiation and modification on Trikafta, mental health, 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 164 members who have written 377 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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