Monthly Results Update

Dear Community Voice member,

Welcome to the November/December 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.

ResearchCon 2020 Executive Committee & Prioritization Survey

The second annual ResearchCon will focus on the next era of cystic fibrosis transmembrane conductance regulator (CFTR) science and genetic-based therapies, a topic that has consistently been a top priority in community research prioritization surveys.

To help shape and execute this virtual event’s content, the ResearchCon 2020 Executive Committee added eight Research Voice members to their group. Thanks to your participation in their prioritization survey, the committee identified what topics will be featured at the event. Click here to view which topics were selected.

CF Community Blog

The CF Community Blog highlights voices from across the CF community and touches on all aspects of life with cystic fibrosis. Several members of the CF community share their personal experiences with cystic fibrosis and the challenges they face, including 104 Community Voice members who have written 254 posts since the blog launched. To help ensure that the topics shared on the blog are important and relevant to the CF community, members took a brief feedback survey about their experience reading and writing for the blog. Click here to check out the full survey results which will be used to help shape upcoming content.

Also, check out the most recent blog posts written by Community Voice members below:

I Have Two Nonsense Mutations. Here’s What a Path to a Cure Means to Me by Chuck Fox
8 Things I Learned When I Had Liver Surgery by Sky Adams
CF is Predictably Unpredictable by Marieliz Landa
My Self-Advocacy Saved Me From Surgery by Eliza Callard
Interview: Ella Balasa Chats with CF Research About Phage Therapy by Ann Field & Gabriella Balasa
What Does “Better” Mean on Trikafta? By Elizabeth Amber
Running Outside Saved My Lung Health and Improved My Well-Being by Morgan Barrett
Facing and Embracing CFRD by Megan Lepore
Creating a Smooth Transition to Transplant Clinic by Paul Merritt
Don’t Be Afraid to Let New Friends Into Your CF World by Amye Phinazee

Want to contribute to the CF Community Blog? Fill out this questionnaire.

CF Research in Progress: The Community's Voice in Action Webinar

In case you missed it, click here to watch the full recording of the CF Research in Progress: The Community’s Voice in Action webinar. Hear community members, researchers and CF Foundation leadership discuss CF research updates and how the CF community is driving improvements in recent research projects, including three major studies addressing GI symptoms, reducing treatment burden, and treating pulmonary exacerbations in children.

Watch Archived Sessions from NACFC

The 33rd annual North American Cystic Fibrosis Conference was filled with excitement as CF scientists, researchers, clinicians, and caregivers from around the world discussed the recent approval of a game-changing triple-combination therapy and other advancements in CF research, care, and drug development.

Interested in looking at presentations, abstracts, and more from this year’s NACFC?

Watch free, on-demand recordings of this year’s NACFC plenaries, workshops, and symposium sessions here.
View the projects that Community Voice members were involved in here.
Access all abstracts that were presented during NACFC here.

Research Summary Review Committee

As part of a larger effort to bring CF research results to the public, the CF Foundation’s Research Summary Review Committee reviews Patient Registry research summaries to help ensure they convey the key points of a research study in a clear and understandable manner. A research summary is a 500-word lay language synopsis of a published research study and are intended for non-scientists, particularly individuals with CF and family members. The committee recently recruited 10 additional CF community members from Community Voice who are joining the 7 existing community reviewers in the group. To see research summaries currently available, please visit CF Research News.

Spanish Language Community Review Committee

In light of the exciting news about the FDA’s approval of the triple-combination therapy, Trikafta, several members of this committee stepped in to help review some of the resources that were translated into Spanish. Click here to read the CF Foundation’s announcement about the approval and answers to frequently asked questions about the therapy. Thank you to these hardworking individuals who are helping to ensure more resources and materials are available to the Spanish-speaking members of our community!

Invite others to join Community Voice by sending them to cff.org/CommunityVoice.

For questions or concerns, please contact the CF Foundation's Community Partnerships department at communityvoice@cff.org.

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