Community Voice: Monthly Results Update
January 2024 Edition
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Dear Community Voice Member,
Welcome to the January 2024 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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Survey Results on Loss of Smell in CF Community
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While limitations in sense of smell is a common problem among people with CF, little information is known about this topic. Researchers at the University of California, Los Angeles (UCLA) and Community Voice surveyed the CF community in spring 2023 to understand how loss of smell has impacted people with CF and their willingness to participate in future research on the topic.
The brief, 3-minute survey was sent out to Community Voice and 76 community members responded, including 74 people with CF and 2 parents of people with CF. Over 90 percent of respondents said they had experienced problems with their ability to smell, with most people indicating their ability to smell had changed over time. More than half of respondents noted that a good sense of smell is important to them, but most participants rated their own sense of smell as “poor”. Most respondents not only felt that loss of smell in people should be studied more closely, but they themselves would be interested in participating in a research study that investigated sense of smell and sinus disease such as an MRI scan-based study.
Results of the survey are available to view. Thank you to those Community Voice members who participated anonymously for sharing your time and experiences to inform future research on loss of smell.
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CF Foundation Financial Wellness Committee
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The Financial Wellness Advisory Committee was launched in September 2023 to help the CF Foundation understand financial wellness priorities within the CF community related to managing current needs for money, coping with unexpected costs, and planning for the future. Special thanks to the Community Voice members below who will serve alongside three clinicians on this committee for a 1.5-year term exploring this important topic.
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Autoimmune Disease in People with CF Survey Results
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Researchers at the University of Florida launched a survey in early 2023 to better understand the experiences of people with CF who have also been diagnosed with an autoimmune disease. The survey also explored people with CF’s experiences with certain symptoms that might lead to an evaluation for an autoimmune disease, such as arthritis, rash, or unusual gastrointestinal (GI) symptoms.
The survey was distributed through Community Voice, care centers, and social media, and 124 community members completed the survey (86 percent of respondents were people with CF and 13 percent were parents of someone with CF). Respondents shared their experiences with arthritis, including where they were affected (most commonly fingers and knees) and the types of arthritis they were diagnosed with. Survey questions about rashes explored their timing relative to antibiotic use. Community members expressed interest in identifying what triggers these symptoms and wondered how medications, stress, nutrition, and exacerbations may or may not be connected.
Full survey results are now available and will help support future research on the diagnosis of autoimmune disorders, including among people with CF. Thanks to the 48 Community Voice members who participated anonymously in this survey!
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Celebrations in the Month of February
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Black History Month
We are proud to recognize February as Black History Month, a month to celebrate the legacy, achievements, and contributions of Black Americans in their families, workplaces, and communities. Join us in using this observance month to celebrate the diversity within the CF community and build a more inclusive community together.
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Apply Now: Male Sexual and Reproductive Health Project
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We need to hear from more men with CF – and parents, caregivers, and partners of men with CF! Researchers at the University of Pittsburgh are using an online brainstorming, rating, and sorting activity to identify priority topics related to male sexual and reproductive health and cystic fibrosis. The research team will use the community's input from these activities to prioritize future research and develop new strategies to incorporate male sexual and reproductive health topics into routine CF care. Participants will spend 20-60 minutes on the brainstorming activity at home on their own time and be compensated $40. If you are interested, please
complete this brief form or contact Clinical Research Coordinator Kelly Prangley by email.
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Keep an eye out for upcoming opportunities in the next few weeks to share your perspectives and experiences including a major survey on how the cost of life with CF affects you or your family and a post-lung transplant advisory committee and more.
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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 176 members who have written
394 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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