Community Voice: Monthly Results Update
September 2024 Edition
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Dear Community Voice Member,
Welcome to the September 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:
- Initial findings from the Breath Sampling at Home survey
- Members of the CF Foundation Sexual & Reproductive Health Position Paper Committee
- Themes from the Young Adult Financial Wellness Focus Group
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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Breath Sampling at Home Survey Results (U.S. and Canada)
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In July, Community Voice conducted a survey of program members in the U.S. and Canada to better understand the CF community’s perspective on the use of at-home breath sampling to potentially diagnose respiratory infections. More than 130 people took the survey (about 80 percent from the U.S., and 20 percent from Canada). The survey included a recorded video demonstration of what the process for collecting a breath sampling at home could look like.
- More than three-quarters of respondents indicated they were not previously aware that breath testing can be used to diagnose infections.
- 63 percent would prefer to give a breath sample over other types of samples (such as nasal swabs, sputum, etc.), and 32 percent had no preference.
- Nearly all respondents would be willing to try collecting breath samples at home for both research and clinical purposes.
For more information, see the full survey results. This survey was a collaboration between Community Voice and researchers at the University of British Columbia. It marks the first time that Community Voice has partnered with Cystic Fibrosis Canada’s Elevate program to distribute a survey to CF community members in both the U.S. and Canada.
Thank you to the 107 Community Voice members who participated in this survey! The results will be used to directly inform the design of future studies and related testing.
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CF Foundation Sexual & Reproductive Health Position Paper Committee
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The newly established CF Foundation Sexual and Reproductive Health Position Paper Committee will research and write a position paper providing guidance on sexual and reproductive health in CF, focusing specifically on pregnancy and fertility (including assisted reproduction). In April, the committee recruited community representatives through Community Voice (open to people with CF and parents of children with CF). We are happy to announce the three Community Voice members who will serve on this group for a one-year !
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Young Adult Financial Wellness Interviews
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In April, the Financial Wellness Advisory Committee held interviews with young adults living with CF to better understand their perspectives on financial wellness. Participants were at various points of transitioning to financial independence with unique experiences and priorities. When asked what “financial wellness” meant to them, participants spoke in very real terms about wanting to stay afloat, setting goals of being comfortable and responsible with money, and having a full life.
Numerous themes were identified through analysis of these discussions, such as:
- The importance of being proactive and getting the information needed to make informed decisions.
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There are barriers that get in the way of financial wellness, like not knowing all the costs related to CF care, not having any savings, having a job that barely covers expenses, and not knowing who or where to turn to for support.
- Things that help support financial wellness include having a support system, opening up to care teams about challenges paying for care, and understanding how mental, physical, and financial health are interconnected.
The committee is grateful to the four young adults from Community Voice who participated and shared insights on this important topic. Their input will help shape forthcoming materials to build awareness around financial wellness and CF.
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Celebrations in the Month of September
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Hispanic Heritage Month
Community Voice is proud to recognize September 15 through October 15 as Hispanic Heritage Month and honor the vibrant traditions, history, and contributions of the Hispanic community. Take this opportunity to appreciate and learn about the diverse cultures that make up the Hispanic CF community and Community Voice membership.
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Take the CF Foundation Long-Term Strategic Planning Survey
The CF Foundation will develop its next long-term strategic plan in 2025 to guide our efforts in the years ahead. It is important that the next plan reflects the diverse and evolving needs of the CF community, including yours. Share about your CF experience, needs, and priorities by taking this 10-minute survey by October 16th.
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Share Your Experiences with CF Newborn Screening
The CF Foundation is seeking community input on a draft guideline with recommendations to improve CF newborn screening, including the best way for CF newborn screening to be performed and how newborn screening labs should notify clinicians about a positive result. You are invited to review the draft newborn screening guideline and share your insights or personal experiences with CF newborn screening now through October 8th.
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CF Circles: Living With Advancing Lung Disease
The CF Foundation is offering a small group discussion for adults with CF who are experiencing advancing lung disease, particularly those with lung function below 40% and who are seeking connection with and support from others in similar situations.
Tuesday, October 15 at 7:00 p.m., ET
This discussion is for adults with CF who are experiencing advancing lung disease, particularly those with lung function below 40%, using supplemental oxygen, and considering or preparing for lung transplant. This event will be a 75-minute community support session, peer-led with CF Foundation staff present to assist with technology.
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Please feel free to share this event with others you know who may be interested in attending.
Visit the CF Circles website to learn more about these small group discussions, including additional upcoming events. Please contact Kelsey Logan with any questions.
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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 189 members who have written 420 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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