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The CF Foundation has been closely monitoring the spread of COVID-19 to evaluate the potential implications for people with cystic fibrosis and their families. Visit cff.org regularly for the latest resources and updates from the Foundation.
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Dear Community Voice member,
Welcome to the June edition of the Monthly Results Updates!
New to Community Voice? Welcome! In these digests you will learn about the impact Community Voice is having through recent opportunities that members have participated in. If you’d like to read about past projects the group has been involved in, click here to browse previous editions.
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CF Adult Advisory Council
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We are excited 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. More than 25 highly qualified Community Voice members applied to fill four open positions. The Foundation’s Board of Trustees recently approved the new members and their term began this month. Congratulations to the eight Community Voice members below who are joining KC White, Kristin Dunn, Somer Love, Lydia Sand, Ed Canda, Ella Balasa to serve on the council for a two-year term!
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The CF Foundation’s Education Committee works to improve the quality of life for people with CF through educating patients, families, health care providers, staff, and volunteers. A request to apply for the committee was sent to nearly 600 people with CF and the committee received 11 quality applications. After careful review of each application by the committee leaders, we are excited to announce that Meagan Tenyer, an adult with CF, will join Community Voice members Cheriz Kunkel and Dora Burke to serve a three-year term on this committee. Congratulations Meagan!
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Mental Health & Emotional Well-Being in Adolescents Focus Groups
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Researchers from the Esiason-O’Hayer Institute for Behavioral Medicine and Thomas Jefferson University Hospital conducted four focus groups with 10 mothers to gather feedback on a a CF-specific mental health intervention designed for teenagers and their caregivers. Through these focus groups, researchers learned about the psychological burden that adolescents with CF may face and feedback for how to improve the intervention to make the caregiver component more user-friendly, accessible, and reflective of the myriad of experiences parents of teens with CF face. The research team also expanded the component to reflect the experience of parenting siblings of children with CF. The next step of the project is to develop a randomized control trial to assess the effectiveness of the treatment intervention in reducing anxiety and depression in adolescents with CF. The team is incredibly grateful and would like to thank everyone who offered their perspective on this project!
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Talking with Children about Chronic Illness Resource Review – Final Update
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Parenting can be tough, and it can be even more challenging as a person with CF who wants to help their child understand chronic illness. To help provide support for adults with CF who are parents, the CF Foundation’s Mental Health Advisory Committee worked with members of Community Voice to review educational resources meant for parents living with any type of chronic illness, and to determine whether they were valuable enough to adapt specifically for parents living with CF. The resources adapted are now available on cff.org, including Balancing Family Life and CF, Talking With Your Child About CF, and Understanding Child Temperament And Development. These resources will also be available for CF care centers to distribute to patients and families. Thank you to everyone who provided their feedback on this project!
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A team of researchers at the CF Foundation recently launched the HERO-2 study, an at-home observational study focused on looking at the outcomes that people with CF experience while taking Trikafta. Community Voice members have been involved since the start of this study in a number of ways, including:
- Participating in the kick-off meeting to discuss the direction of this new kind of research
- Joining the project team as study co-designers
- Evaluating the concept and design as members of the Scientific Advisory Board
- Reviewing the study’s recruitment materials to ensure they give a clear overview of the study, provide the information needed to understand why the research is being done, and describe what the study will involve.
Learn more about the HERO-2 study which is now recruiting participants through the Clinical Trials Finder on cff.org, and thank you to everyone who participated in this project!
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Researchers from the University of Washington and the University of Illinois at Chicago are conducting a research study funded by the CF Foundation to better understand the connection between the menstrual cycle and CF-related symptoms. Researchers hypothesize that hormones may play a part in the disease progression of females with CF, specifically the fluctuation of estrogen.
The pilot study is recruiting 80 women with CF between the ages of 18-45 who have regular menstrual cycles and are on either non-hormonal or hormonal contraception. Participants will be asked to track their daily CF related symptoms such as mucus production, joint pain, GI issues, and sinus issues for up to four menstrual cycles at home, either on a free mobile app or in a written diary. About 30 participants who complete the study will also be interviewed to share more about their symptoms and how they manage them.
If you would like to participate in this opportunity, please submit an interest form to participate in the study by Tuesday, July 13, at 5 p.m., ET. All participants will be compensated for their time and effort.
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BreatheCon 2021 Work Group
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The sixth annual BreatheCon will be held on September 24 – 25, 2021. BreatheCon is a two-day event for adults with cystic fibrosis that provides a virtual space to share, connect, and learn while supporting one another. The 2021 event co-chairs Olivia Clark and Sarina Sandstrom would like to invite adults with CF to join the BreatheCon work group to help design the event agenda, develop panel sessions, and participate in event promotion.
If you are interested in joining the BreatheCon work group, learn more about the expectations and goals and register for the work group kick-off call on Tuesday, July 6 at 6:30 p.m., ET. All adults, 18 and older living with CF are welcome to attend. We greatly value having a diverse representation of backgrounds and CF experiences, especially voices from under-represented groups in regard to ethnicity, sexual identity and orientation, age, and health status.
This interest form will close on Monday, July 5 at 11:59 p.m., ET.
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Impact of Trikafta on Children’s Sinus Symptoms and Sleep Disturbance Study
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Both sleep and sinus problems are common among adults with CF. A research group from the Children’s Hospital of Richmond at Virginia Commonwealth University is working to learn if children experience these problems and whether they may be affected by taking Trikafta. Parents of children with CF ages 6-11 years can participate in an anonymous survey regarding how Trikafta impacts their child’s sinus symptoms and sleep disturbance. Participants can access the 5-10 minute survey, which will direct them to several brief demographic questions and two standardized questionnaires: the Children’s Sleep Habits Questionnaire and the Sino-Nasal Outcomes Test-22. These will be completed through REDCap, which is a secure, web-based application designed to support data capture for research studies.
Parents will be asked to repeat these two surveys one month after their child starts Trikafta, to help the researchers evaluate whether any changes have occurred after starting the medication. The pre-Trikafta and post-Trikafta surveys will be linked in REDCap, but email addresses will not be linked to survey responses. After completion of the post-Trikafta surveys, parents will be issued a $25 e-gift card as a thank you for participation.
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Sharing Insights & Experiences Through the CF Community Blog
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Check out these recent blog posts by Community Voice members! Community Voice currently has 140 members who have written 314 posts since the CF Community Blog launched. Also, make sure to read this blog post that shares books and music created by members of the CF community!
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