Community Voice: Monthly Results Update
February 2023 Edition
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Dear Community Voice Member,
Welcome to the February 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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Community Voice Year in Review 2022
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Another year down and Community Voice members continue to make a huge impact.
In 2022, members got involved in various cystic fibrosis research and care efforts while also continuing to connect with and support others in the CF Community. Thanks to you, the Cystic Fibrosis Foundation has gained momentum towards a cure.
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We are pleased to share the Community Voice: Year in Review Report! Within this report, we reflect on the biggest achievements from the past year and share:
- How membership has grown and its impact in spaces like cure, care, and community efforts
- Testimonies from CF Foundation staff and researchers about how essential Community Voice participation is in advancing their work
- A look ahead at the priorities our team will focus on in 2023
Thank you for being an essential partner in our shared mission to help provide all people with CF the opportunity to lead long, fulfilling lives. We look forward to another impactful year ahead!
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Social Determinants of Health - Update
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In 2019, we asked you about the challenges you face with insurance, access to care, and cost. Last month, the Journal of Cystic Fibrosis published the results of the study, which more than 1,800 people in the CF community participated in. Results found that two-thirds of respondents experience debt, food insecurity, or housing issues. Notably:
- 84% of respondents participate in financial assistance or grant programs to cover or offset health care costs, despite nearly all people with CF having insurance
- 45% of respondents report delaying or forgoing care due to cost
- 65% of respondents report that their concerns about insurance status have affected major life decisions such as switching jobs, getting married, or moving to another state
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33% of respondents experienced some type of food insecurity in 2019
The Foundation uses these research projects to identify initiatives and resources that may address and ease the financial burden faced by so many. Thank you to everyone in our community who shared their feedback with us.
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Mary M. Kontos Award Selection Committee
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In December, the CF Foundation sought one parent of a child with CF to join the Mary Kontos Award Selection Committee. This award honors non-physician CF clinicians (Nurses, Social Workers, etc.) who exemplify outstanding care to patients and families. The committee’s goal is to select two award recipients from U.S. CF Care Centers based on submitted nominations. It is important to include people with CF and family members in this decision to ensure that the nominees showcase great care in a real-world setting. The award is named after Mary Margaret Kontos, PNP, a CF nurse coordinator who exemplified these characteristics. We are pleased to announce the selection of Community Voice member Aryana Treweek who will serve on the committee for a 2-year term!
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Daily Care Check-In Resource Review
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Taking care of CF in everyday life is not always easy, and there are times when it is harder to complete treatments. Recognizing the importance of keeping up with therapies, the CF Foundation’s Success with Therapies Research Consortium partnered with CF community members including those who serve on the Spanish Language Community Review Committee to develop the Daily Care Check-in resource in both English and Spanish. This tool is meant to help people with CF and their caregivers have ongoing discussions with their care teams about what might be getting in the way of sustaining their daily CF care regimen. We would like to thank Cecilia Lozano and Sylvia Mazuera for helping review this resource, which is now being implemented in several care centers across the country!
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Celebrating Women's History Month
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This month, Community Voice is proudly recognizing March as Women’s History Month. We invite you to use the month to celebrate the contributions and achievements of women, past and present, who have made an impact on our families, community, and society.
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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 health equity, GI experience, SDOH, medical traumatic stress, and more.
In the meantime, check out open opportunities to participate in today!
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Impact Grant Applications Open
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No one knows life with cystic fibrosis better than people with CF and their loved ones. That is why we want to hear from you! Your idea for a program that serves the CF community could receive an Impact Grant, which awards up to $10,000 per year for up to two years, to individuals or organizations that benefit and empower the CF community. We encourage you to think big and envision what you would like to see available for the CF community. Apply for an Impact Grant by April 5.
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Join a 2-Week App-based Study for the CF Tummy Tracker
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Last year Community Voice members participated in a survey to help inform the development of the CF Tummy Tracker phone application. This patient reported outcome measure (PROM) will be used to measure gastrointestinal symptoms for people with CF. The requestors are now at the next stage of their study which entails a two-week app-based study where people with CF are asked to record any gut symptoms they have every day for 14 days via a smartphone app. For more information on the study please click here, or if you would like to participate, sign-up here.
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Apply to Join the Community Survey Review Ad-Hoc Group
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The Community Voice team is looking for adults with CF and caregivers to join the Community Survey Review Ad-Hoc group. We understand the value of including the community in upcoming research and care-related projects. This group of people review and provide essential feedback on surveys to help ensure they are relevant, lay-friendly, and meaningful before dissemination.
We are looking for around 10 individuals to join this ad-hoc group and welcome many different perspectives. Please click here to learn more about this group including its purpose and expectations of members. If interested, please click here to fill out a short interest survey.
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