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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 recent opportunities that Community Voice members have participated in, the feedback, ideas, and insights we gathered, and the next steps or impact of each project. If you have any questions or feedback on how we can improve these digests, please contact us at communityvoice@cff.org.
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Policy & Advocacy: In-District Meeting Toolkit, Community Webinar, & Survey ResultsThe Foundation’s Policy and Advocacy team conducted a survey of adults with CF in Community Voice to hear their perspective on issues concerning policy, advocacy, legislation, and how people can get involved. These survey results were presented at a task force meeting that helped identify ways to better engage adults with CF in this space. Here are three ways to get further involved in advocacy today: - Sign up to receive Advocacy Alerts to tune in and learn more!
- Check out the In-District Meeting Toolkit. There’s no better time to put advocacy into action than during the upcoming summer recess, and this new resource provides all the information you need to make the most of summer advocacy opportunities.
- Mark your calendars for the next advocacy Community Webinar, Thursday, August 1 from 1:00 - 2:00 p.m. ET. View the last webinar here, which addressed three particular policies of concern regarding affordability and out-of-pocket costs.
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Livestream Prioritization Survey
This year, the North American Cystic Fibrosis Conference (NACFC) will be held in Nashville where cystic fibrosis researchers and clinicians can learn about and collaborate around the latest advances in CF research and care. To increase the accessibility of medical and research information of most interest to the CF community, the NACFC Program Planning Committee conducted a survey last month to prioritize which topics should be livestreamed during the conference. Specific workshops and sessions of most interest were identified, which can be found here.
All livestreamed sessions will be available in real time during NACFC and via online archive after the conference. Regardless, if a session is livestreamed, nearly all symposia and workshop presentations (slide and audio) will be available online after the conference. To learn more about NACFC or view past sessions, please visit nacfconference.org.
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Strategic Planning Survey
Each year we’re making progress on cystic fibrosis research, treatments, and care. But as CF research and care are changing, so are the needs of the CF community. Thank you to everyone who participated in last month’s survey and shared feedback on how the Foundation can better support and strengthen the CF community in light of these changes. These survey results are being used to inform the Foundation’s strategic plan and overall approach to meeting the evolving needs of people with CF over the next five years.
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Teen Working Group Calls - Facilitator Recruitment
This summer, the CF Foundation will launch virtual groups for teens with CF to connect with one another. The goal of these teen groups is to provide a fun and interactive space for teens to connect, share stories, and learn from one another.
Several adults with CF from Community Voice were recruited to become facilitators for these groups for a one-year pilot program. The role of the facilitators will be to help get the conversation going and maintain a positive environment during the calls. Get to know the facilitators here.
If you know of a teen with CF who would be interested in connecting with other teens, have them sign-up today at www.cff.org/teensignup.
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Placebo Handout Focus GroupTo help care teams facilitate informative conversations with their patients who are considering participating in clinical trials, Research Voice members participated in a focus group where they gave feedback on a resource that explained what placebos are, why they are important, and how they are used in CF clinical trials. Their feedback helped ensure the resource was easy to understand and included the key information a person would want to know about placebos when considering participating in a clinical trial. The handout is now available for download on cff.org and is currently being distributed to care centers.
Interested in participating in a clinical trial? Learn more about what it means to be a trailblazer and search for trials that may be right for you by clicking here.
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CF Care Motivation SurveyThe CF Foundation conducted a one-question survey to better understand what motivates people with cystic fibrosis to manage their daily CF care. Over 75 responses were submitted, ranging from traveling the world and enjoying life to the fullest, to living long enough to experience wrinkles and gray hair. Below are some examples of the submissions we received, which will be used to enhance how the Foundation communications about CF care.
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"I use my vest each day so that I can chase my 4 year old all over the soccer field."
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"I use my nebulizer so that I can breathe a bit better and walk outside and feel the wind against my face."
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"I take Symdeko so that I can have energy to travel the world."
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Exercise and Airway Clearance SurveyEarlier this year, the Evidence Based Child Health Group at the University of Nottingham conducted a survey about exercise and its ability to replace airway clearance techniques -- a topic that was identified by the CF community as a top research priority. The purpose of the survey was to delve deeper into this topic and identify more specific questions that could be answered by research. Click here to read the survey results, which are also being used to help shape the working group’s research agenda.
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Patient and Family Advisory Council Focus Groups
As a follow-up to last year’s survey about Community Voice member participation in patient and family advisory councils (PFACs), nine focus groups were held with adults with CF, parents, and care team members to learn about the value that these groups bring to the local community. Check out the summary report on the focus group findings. This information will be considered as a part of the CF Foundation’s current long-term strategic plan.
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Pulmonary Exacerbations in Children with CF Survey
CF researchers have been working with the Foundation to develop a national study on the outpatient treatment of pulmonary exacerbations with oral antibiotics in children with CF. Community Voice members and CF care providers shared their feedback on the different aspects of treatment and the key questions that are most important to study. Researchers will use this feedback at an upcoming meeting to inform the study's design. Stay tuned for the next opportunity for this project, where researchers plan to gather further feedback from the community on specific questions related to the study.
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Writing for the CF Community BlogCheck out these recent blog posts by Community Voice members! Community Voice currently has 88 members who have written 203 posts since the CF Community Blog launched!
Want to contribute to the CF Community Blog? Fill out this questionnaire.
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