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Dear Community Voice member,
Welcome to the August 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, browse previous editions.
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Visit cff.org regularly for the latest resources and updates from the Foundation regarding COVID-19.
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Community Voice is now 1,500 members strong! Thank you for being a part of Community Voice. Your perspectives continue to provide valuable insight into the CF community’s needs and challenges, which helps improve research, care, and programs for everyone affected by CF.
What’s next? The CF community is transforming rapidly, and it is vital that that every voice in the CF community is heard. We encourage you to invite others you know to join Community Voice by using the new Community Voice: Promotion Guide, which is our peer-to-peer recruitment toolkit designed specifically for Community Voice members, or by sending them directly to my.cff.org/CommunityVoiceSignup. Thanks again for being a part of this group - we look forward to many more milestones ahead!
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Launch of Lung Transplant Biorepository and Patient Registry
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The CF Foundation recently launched a first-of-its-kind Cystic Fibrosis Lung Transplant Consortium Biorepository and Patient Registry specifically to study lung transplantation. The biorepository and registry will act as a library – storing biological samples and clinical data that can be accessed by researchers with the goal of preventing complications like chronic lung allograft dysfunction for people with CF who receive a lung transplantation.
To maximize the number of samples and data available for research, any individuals who receive a double-lung transplant will be able to participate, regardless of whether or not they have CF. Learn more about the biorepository and registry here.
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“The biorepository and registry represent an exciting leap forward in our ability to understand and use research to help improve lung transplant outcomes. Our goal is ultimately to prevent complications for all people with CF who have undergone lung transplantation.”- Al Faro, MD, Vice President of Clinical Affairs, Cystic Fibrosis Foundation
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Genetic Therapy Working Group
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As genetic based therapies research has continued to expand, the CF Foundation created the Genetic Therapy Working Group which consists of members of the CF community, the CF Foundation, the Therapeutics Development Network Coordinating Center, Therapeutics Development Network investigators, and research coordinators. This group was established to educate CF researchers and study participants, provide sponsors with early feedback on preclinical data in support of clinical trials of genetic therapies in CF participants, and offer considerations for study designs (including study endpoints). The group received 14 applications for their call of interest and we are excited to congratulate the four new members who will serve as a part of this work group!
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One additional Community Voice member not pictured will also be joining the committee.
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CF Foundation’s Website Replatforming Project
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For nearly two years, the CF Foundation has been developing a new cff.org. Through this overhaul, we have focused on improving how we support people with CF live their best possible lives, no matter where they are on their CF journey, and ensure everyone is able to find the information and support they seek when visiting the website. Community Voice members participated in focus groups, one-on- one interviews, surveys, and testing to provide guidance at many points along the way. The new website will address key concerns identified by the community, including:
- An intuitive navigation and robust search function that is built around the needs of people with CF and their families to make finding information easier
- Attention to the diversity of the CF community and the breadth of CF journeys
- An improved experience for Spanish speakers
- A clearer starting point for newly diagnosed families who are likely feeling overwhelmed and looking for guidance and support
- More frequently pairing the community’s lived experience with related clinical information
The new website, which is scheduled to launch late in 2021, serves as a tangible example of how your involvement through Community Voice will make a lasting impact on the entire CF community for years to come. Thank you to everyone who participated in this multi-phased project!
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Well-Being & Health Outcomes Focus Groups (Final Update)
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Earlier this year, more than 20 members of Community Voice participated in a focus group to provide insights on how to measure overall well-being of people with CF. With this input, the Foundation partnered with adult CF care programs participating in the CF Learning Network to test select well-being measures through a small pilot study. These programs added these measures to an existing telehealth Experience of Care Survey and collected 48 responses over three months. There was significant variety in ratings of well-being, highlighting the uniqueness of every individual’s CF journey. Most adults who have responded so far reported their overall well-being favorably, with the most challenges noted in physical and financial well-being. While this is a small pilot sample, the Foundation is continuing to gather responses to this survey to learn about how best to characterize well-being across the CF community. Thank you to everyone who participated in this project!
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Lung Transplant Decision Support Tool Survey (Update)
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Being well-informed and feeling prepared is crucial for making decisions surrounding lung transplantation, a treatment option that can extend and improve the quality of life for a person living with cystic fibrosis. Through a two-pronged survey completed by adults with CF and caregivers in Community Voice, researchers at the University of Washington gained valuable insight into the CF community’s perspectives and experiences surrounding the decision-making process of receiving a lung transplant. Some individuals who participated in the survey then served on a work group to help inform and do initial testing on a lung transplant decision support tool that aims to help people with CF have conversations with their doctor about lung transplant. The survey results will soon be submitted as a manuscript to a medical journal, and the research team presented the initial data in a grant proposal to study the decision support tool in a clinical trial. Thank you to everyone who participated and stay tuned for an update on this project!
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For Adults with CF: Register for BreatheCon!
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Get to know other adults living with CF on September 24 – 25 at BreatheCon: a free, virtual event open to adults with CF age 18 and older. Attendees will have the opportunity to discuss experiences unique to life with CF during keynote panels, group chats, small-group video breakouts, and more. Come together and learn from others through sessions focusing on creative outlets, along with mental and emotional health. Check out the full agenda and register now at cff.org/BreatheCon!
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Also, we would like to give a special shoutout to several Community Voice members who are shaping and/or speaking at the event. Thank you for giving hundreds of adults with CF an online space to come together for candid and honest conversations about experiences unique to life with CF!
- Olivia Clark (Co-Chair)
- Anny Ockenfels
- Anthony McDaniel
- Ashley Coleman
- Beth Sufian
- Elizabeth Amber
- Jessi Mollman
- Lauren Ortiz
- Leah Schwanke
- Marissa Benchea
- Mark Levine
- Nick Kelly
- Tannaz Motevalli
- Tara Goodwin
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For everyone: Register for ROSE UP!
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In the summer of 2020, a group of adults with CF, including many from Community Voice and all over the country, gathered virtually to unite and help the CF Foundation get one step closer to finding a cure for all. Together they created ROSE UP, a virtual fundraising event that raises dollars and awareness through creative, meaningful acts to advance the CF Foundation’s mission.
The ROSE UP planning committee includes 10 members (all of whom are also a part of Community Voice!) to help engage ambassadors and participants, curate community stories to highlight, plan and execute events, and create and distribute promotional materials. Congratulations to these members and good luck at this year’s event on September 17, 2021!
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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 141 members who have written 318 posts since the CF Community Blog launched.
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