Community Voice: Monthly Results Update
June 2024 Edition
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Dear Community Voice Member,
Welcome to the June 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:
- Update on results from the COST-CF Survey
- Members selected for the CF Foundation Education Committee
- Members selected for the CF Adult Advisory Council
- Available Resources for the Spanish-speaking CF Community
- Stay up to date on the latest Research and Care Updates
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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Recently, the CF Foundation conducted a survey to better understand how the cost of CF impacts daily life and access to healthcare services. The Cystic Fibrosis Outcomes, Social Needs and Tradeoffs due to Coverage and Financial Burden (COST-CF) survey was open to members of the CF community and care teams. Nearly 1,400 people shared their experiences while the survey was live from late February to early May, with about 80 percent of responses coming from people with CF, parents, and caregivers. Data from this survey will help the Foundation understand how to inform and support the CF community and care teams in addressing financial issues associated with CF. Important themes from the data include:
- Many people in the CF community experience challenges with health-related social needs, such as food insecurity, housing insecurity, and lack of dependent care.
- The costs of living with CF can impact access to healthcare services and cause delays in care.
- CF care teams and Compass case managers currently play an important role in helping the CF community understand insurance and find financial resources.
A more detailed update will be available in the coming months. Thanks to all who participated in taking this survey!
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CF Foundation Education Committee
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The CF Foundation’s Education Committee works to improve the lives of people affected by CF by educating patients, families, health care providers, staff, and volunteers, including access to current, high-quality CF educational materials. The committee partnered with Community Voice in April to recruit two adults with CF to serve on the committee alongside clinicians from multiple disciplines. The Education Committee received many strong applications and is happy to announce that Community Voice members Schyler Kline and Carolyn Ottke-Moore will serve on this group for a three-year term. Congratulations, and thank you to all who applied!
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CF Adult Advisory Council
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We are pleased to announce the newest members of the CF Adult Advisory Council (AAC)! This council is a rotating group of adults with CF who lend their voices to convey the hopes, needs, and aspirations of the CF adult community by tapping into the strengths and expertise of other community members. These volunteer leaders will continue to serve as reviewers for Impact Grants and provide timely feedback on a variety of projects, including better ways the CF Foundation can partner with people with CF in key programs and events, such as the Volunteer Leadership Conference. We would like to congratulate new the four members who will serve on the council for a two-year term.
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Resources for the Spanish-speaking CF community - Spanish community conference recordings
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Do you know anyone with CF who primarily speaks Spanish or has Spanish-speaking family members and may be interested in Spanish resources about CF? We are pleased to provide the Spanish recordings from our 2024 Community Conferences (BreatheCon and ResearchCon) so you can share them with any Spanish-speaking community members in your network. The recordings cover various topics such as genetic therapies, newborn screenings, daily care and treatments with CF, and more. You can view the Spanish recordings from ResearchCon and BreatheCon at your own leisure.
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Celebrations in the Month of July
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Disability Pride Month
Community Voice is proud to recognize Disability Pride Month throughout July. This is a month to celebrate the achievements, contributions, and experiences of people with visual, hearing, mobility, cognitive, neurological, learning, and mental health disabilities in the CF community. Join us in listening and learning from the experiences of people with disabilities and explore ways to champion inclusivity within the CF community.
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Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences including reviewing grants for the Health Equity Team Science Award (HETSA), a survey on breath sampling at home, an advisory committee on mental health, and more!
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Sign up for Research and Care Updates
Do you want to stay updated on the latest advancements in CF treatments and care? Sign up for the Research and Care Update Email, which is sent out every two months. The emails cover the latest Foundation-funded CF research, provide important updates that affect medical care for people with CF, and offer ways for the CF community to provide feedback on both topics. To sign up for these emails, visit our website, and select “Research and Care” under “interests.” The latest edition went out on June 11.
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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 187 members who have written 415 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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