Community Voice: Monthly Results Update
May 2022 Edition
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Dear Community Voice Member,
Welcome to the May 2022 edition of the Monthly Results Updates!
In these digests you will learn about the impact Community Voice members are having through their participation in recent opportunities. If you would like to read about past projects, browse previous editions.
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Success with Therapies Research Consortium mHealth Report
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The Success with Therapies Research Consortium (STRC) manages the clinical study of interventions that help people with CF enhance their routines and manage their care to improve health outcomes and quality of life. Thanks to the Community Voice members who participated in the 2020 Community Input Project survey and recent virtual workshops, the STRC has continued to focus on mobile Health (mHealth) -- the practice of medicine and public health supported by mobile devices.
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The survey data identified which research ideas would be developed into a study and were presented during a workshop to discuss potential mHealth products that could be used to help people with CF better manage their care. We are pleased to share the STRC’s mHealth report, which includes key takeaways from the workshops and the three final mHealth products that were selected.
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Newborn Screening Steering Committee
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Newborn Screening (NBS) is a nationwide program used to detect certain health conditions that a baby might be born with, including cystic fibrosis. Through the NBS initiative, the CF Foundation is focused on advancing equity, sensitivity, and timeliness in diagnosing babies with CF to enhance health outcomes and diminish disparities. We know that people with CF from racial and ethnic minority groups are less likely to be diagnosed at the time of newborn screening, resulting in delayed or misdiagnosis. The NBS Steering Committee was established to work towards developing modern and comprehensive screens, especially for those with nonsense and rare mutations. The committee sent out a call for applications through Community Voice to recruit parents of children under the age of ten and received several quality applications. We are excited to congratulate the new members below who will be a part of this group for a two-year term!
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Communication Barriers in CF Care Focus Group Update
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In April, six members of Community Voice joined a focus group to have an open discussion about their experiences with trust and partnership with their care teams as people of color and/or members of the LGBTQIA+ community. The focus group leaders asked questions around trusting one’s care team and how individuals felt when their care teams trusted their lived experiences. The focus group shared stories across themes of trust, transparency, a sense of safety, and validation of experiences and feelings in respect to their cultural background and identity. The Partnership Enhancement Program (PEP) team is grateful for the participants’ willingness to share their range of experiences. The PEP team will be presenting these themes at the next PEP Learning Community Webinar for CF care team members and will have discussions about what providers can do to build and maintain trust and partnership with those they care for.
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The Reflux Workshop Series was created to address community member concerns around lack of education and difficulty in finding treatments for reflux. The Foundation recently sent a request to nearly 700 adults with CF in Community Voice to participate in four, virtual workshops. These workshops are designed to identify ways to improve the diagnosis and treatment of reflux in people with CF who have advanced CF lung disease and/or who are pre- or post-lung transplant. We are happy to congratulate Brian Armstrong, Christina Schulze, David Pruit, Kasey Raffensperger, Lauren Jones, and Madeline Poranski who were selected to participate in these workshops in the upcoming months.
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In the Month of May we Celebrated...
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Asian American, Native Hawaiian, and Pacific Islander Month
Community Voice was proud to recognize Asian American, Native Hawaiian, and Pacific Islander (AANHPI) Heritage Month throughout May and celebrate the contributions, achievements, and diversity of the AANHPI CF community. This celebration highlights the legacy of family, friends, and allies within the AANHPI community, and celebrates diversity within the CF and Community Voice communities.
CF Awareness Month
Every May, the CF community gathers to enlighten others about the disease, share unique experiences and personal stories, and unite behind our mission to find a cure for all people with CF. This year's campaign theme, “More Than a Lung Disease,” highlights while CF is primarily considered a lung disease, it can also impact everyone differently depending on factors such as age, disease severity, and mutations. Use the hashtag #CFAwarenessMonth to see the stories that have been shared throughout the month. For even more ways to get involved, visit our resource page on cff.org.
Mental Health Awareness Month
We celebrated Mental Health Awareness Month throughout May and highlighted the importance of mental health while breaking down the stigmas associated with both mental health and addiction. Mental health is a crucial aspect of peoples’ lives that includes emotional, psychological, and social well-being which is experienced through all stages of life. You can share your story and hear from the CF community about their experiences surrounding mental health on the CF Community Blog.
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UPCOMING & OPEN OPPORTUNITIES
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National Institutes of Health & CF Foundation Workshop
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The CF Foundation is co-organizing a virtual workshop with the National Institutes of Health to focus on current and future research needs in the era of highly effective modulator therapies for CF. The goal of the workshop is to bring together experts in CF clinical-translational research to address critical questions and inform the field of future research needs in the era of highly effective modulators. Through Community Voice, workshop leaders recruited four CF community members to speak and share their experiences. A big congratulations to Jennifer Kyle, Melanie Lawrence, Kade Hammes, and Lisa Hamburger! Learn more and register for the free, virtual, two-day online workshop which will be held on Thursday, June 2 and Friday, June 3.
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Webinar para la comunidad: Terapias genéticas para la FQ (Genetic Based Therapies Webinar)
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| Upcoming & Open Opportunities
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La fibrosis quística (FQ) es una enfermedad genética. Si eres una persona que tiene FQ o un padre de alguien que tiene FQ, lo invitamos al webinar en ESPAÑOL el 14 de junio a las 7 p.m. ET (hora del este). La tema que hablaremos es sobre las terapias genéticas, partiendo de lo básico: ¿Cómo funcionan las terapias genéticas en el cuerpo? ¿En qué se diferencian de las terapias existentes? ¿Qué tipo de beneficios podrían proporcionar? Hacia el final del webinar, tendrán la oportunidad de hacer sus preguntas a lost expertos en FQ. Si está interesado, por favor regístrese.
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| Keep an eye out for upcoming opportunities in the next few weeks, such as to express interest in joining the Education Committee and share your perspectives and experiences on topics such as well-being, sexual and reproductive health for men, 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 154 members who have written 342 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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