Community Voice: Monthly Results Update
July 2022 Edition
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Dear Community Voice Member,
Welcome to the July 2022 edition of the Monthly Results Updates!
In these digests, you will learn about the impact Community Voice members are making through participating in recent opportunities. If you would like to read about past projects, browse previous editions.
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Identity Development in Young Adults with CF
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Adolescence is an important time where many life-long decisions are made related to, career choices, higher education, and deciding where to live. Research has shown that having a chronic medical condition can impact how these choices are made.
Through a series of interviews with five community members between the ages of 21-25, Andrew Vall, a doctoral student of psychology and adult with CF, sought to understand how people with CF made these choices and how they saw themselves developing into young adults.
Check out some key findings from these interviews below.
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These findings will help healthcare workers and therapists better assist adolescents with CF in understanding themselves and the choices they will make in the coming years. Thank you to the Community Voice members who participated in this important work!
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The CF Foundation’s Education Committee works to improve the lives of people affected by CF through educating patients, families, health care providers, staff, and volunteers. The committee recently hosted a call for applications through Community Voice to find a parent or caregiver to serve on the committee for a three-year term. The request for applications was sent to more than 750 parents or caregivers of a child or adult with CF, and the committee received 20 quality applications. After committee leaders carefully reviewed each application, we are happy to announce that Rachel Hill will join Meagan Tenyer and Dora Burke to serve on this group for a three-year term. Congratulations, Rachel!
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Remote CF Care Community Grant Reviewers
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In April, the CF Foundation recruited 10 adults with CF and caregivers of people with CF to participate on the 2022 Tools for Remote CF Care Delivery Grant Review Team. This team is responsible for reviewing grant applications that seek funding from the CF Foundation to test tools, processes, and practical considerations for home spirometry, respiratory sample collection, and other clinical data beyond in-person clinic visits. Community reviewers will provide feedback on the grant applications and assess how reasonable and applicable they are to people with CF. The request was sent to nearly 1,620 Community Voice members and the team received 29 competitive applications. We are happy to congratulate the following people who will serve as community reviewers for these grants: Dan Schulke, Ginger Birnbaum, Kristina Robinson, Rebecca Murray, Jacob Ward, Annette Perry, Ella Balasa, and three other Community Voice members. A big thank you to these members who will participate in these grant reviews in the upcoming months!
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"As we have grown ever more aware of the inequities in access to quality healthcare, it is an honor to be a voice advocating for the efforts being made to increase diversity and access to CF care delivery and offer alternative perspectives in this area as a community advocate."
- Annette Perry, Community Voice Member
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“I’m thrilled to be part of the 2022 Tools for Remote CF Care Delivery Grant Review Team. As a motivated person living with CF, I can share my lived experiences directly, which are integral for making and helping to shape the future of care delivery for all people with CF.”
- Kristina Robinson, Community Voice Member
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LITE Study Expert Review Team
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Researchers from The Hospital for Sick Children, Toronto, the University of North Carolina at Chapel Hill, and Seattle Children’s Hospital sent out a request for applications to more than 600 parents of children with CF in Community Voice to join their review team for the LITE study. This study focuses on multiple breath washout (MBW), a new breathing test that measures the lung clearance index (LCI) which can help identify early signs of lung damage. The study review team’s goal is to design a research study that will determine whether the LCI gathered by the MBW can inform treatment decisions among CF care providers to improve lung function. A special thank you and congratulations to the following members who will serve as a part of this study review team for a one-year term!
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Social Determinants of Health Spring 2022 Recruitment Opportunities - Update
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Over the past several years, the CF Foundation has continued to emphasize the impact social determinants of health (SDOH) and social risk factors have on CF care. In May, two focus groups were held in which CF community members shared their experiences with cost challenges and social risk factors they may have gone through, and what tradeoffs they made to pay for their care. These focus groups helped inform a workshop series that brought together a diverse group of stakeholders to help identify research priorities within the CF community to improve understanding of how cost, utilization, and social factors impact the delivery of high-quality CF care and health outcomes. Some of the top research priorities included understanding:
- The cost and impacts of cost of CF (health impacts, additional utilization, tradeoffs)
- Access challenges for the CF community and how these vary in different populations and at different points throughout the CF care journey
- Impacts of social risk factors, how to screen for social risk factors, and how to successfully intervene to reduce these challenges
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Education needs for people with CF, care teams, and the general population on insurance, social risk factors, and the needs of people with CF
Findings from these workshops will be used to: determine research priorities in the cost, utilization, and social factor space; encourage additional research and grow the research body related to these topics, and guide CF Foundation programmatic efforts in supporting care teams and the community. Thank you to the CF community members who participated, including Georgia Brown, Aryana Treweek, Kristina Robinson, Cade Hovater, and Brian Armstrong. Be on the lookout for more updates in the upcoming months on projects related to SDOH.
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Beam for Cystic Fibrosis is an online, exercise, education and wellbeing platform designed specifically for people with CF. Adults 18+ can sign up for free and participate in live and on-demand classes as well as multi-class programs such as “Getting Started: Advanced Disease” and “Cardio Challenge” led by instructors who are working in or living with CF. The CF Foundation has extended the agreement to provide free access for US adults with CF through the end of 2022. You can register online using the blue “Get Started” button. No promo code or payment method is necessary. For questions, contact pbeatty@cff.org.
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UPCOMING & OPEN OPPORTUNITIES
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| Upcoming & Open Opportunities
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NextBreath is a free, biannual virtual connection event that helps support people who are living with advanced CF lung disease, navigating lung transplant, or living post-transplant, as well as their family members. This summer session will focus on supporting well-being and empowering those who are living post-transplant or living with advanced CF lung disease. Attendees will hear from keynote speakers, participate in one-to-one conversations with attendees, contribute to small group discussion with peers going through similar experiences, and join wellness-based activities and workshops. Registration for the summer session of NextBreath is now open!
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| Keep an eye out for upcoming opportunities in the next few weeks to share you perspectives and experiences on topics such as inhaled antibiotics, mental health, cystic fibrosis-related diabetes, 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 156 members who have written 348 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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