Monthly Results Update

The CF Foundation has been closely monitoring the spread of the coronavirus (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. Please note that participating in Community Voice opportunities is always optional.

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, click here to browse previous editions.
Opportunities Open for Participation:
Share your insights on CFTR Modulator Ineligibility/Nonuse 
To support the Foundation’s efforts to support people who are ineligible for or unable to benefit from approved (CFTR) modulator therapies, including ivacaftor (Kalydeco®), lumacaftor/ivacaftor (Orkambi®), tezacaftor/ivacaftor (Symdeko®), and elexacaftor/tezacaftor/ivacaftor (Trikafta™), the Community Voice team is looking to hear from these individuals to understand their needs and experiences to ensure this perspective is represented in all our work. As a part of this effort, community members will have the opportunity to share their insights and participate in various projects surrounding this topic.

We are still looking for people with CF, parents of children with CF, and partners of people with CF who have either been diagnosed with nonsense or rare mutations and have not yet been approved to take a CFTR modulator therapy, or are not approved/taking CFTR modulators for any other reason, to participate in this effort. Of the Community Voice members who filled out the survey and fall into this category, at least 40% would like the CF research community to better address the needs of those living with CF who have rare/nonsense mutations. It is important to hear from everyone who does not currently benefit from these therapies. If you would like to share your insights on this topic, please fill out the short interest survey by clicking on the button below.
Take Interest Survey
Join Us for the 2020 North American Cystic Fibrosis Conference (NACFC) Virtual Experience
With the safety of the entire CF community as a top priority, the North American Cystic Fibrosis Conference (NACFC) will be held virtually this year. On October 7th, the online platform for the conference will open with on-demand sessions and networking capabilities. Live broadcasting for the conference will be from October 21st- 23rd. Community members interested in attending the conference will also have ability to register for a complimentary track, which will include five free community-selected symposia sessions. 
Check out this year’s Plenary sessions:
  • Plenary 1: Laying the Foundation for the Path to a Cure: The Fundamentals of Genetic Therapies
  • Plenary 2: Defining the New CF in the Era of High Effective Modulators
  • Plenary 3: Advancing the GI Frontier for People with CF
For more information regarding the structure of this year’s conference, please visit the Registration Information page. You can register for the conference here: 
Register Here
Success With Therapies Research Consortium (STRC) Community Input Project Survey - Update 
To help address the challenges faced by people with CF and their caregivers, the Success with Therapies Research Consortium engages in clinical research studies of interventions focusing on daily adherence and disease self-management to improve optimal health outcomes and quality of life. Following up on the last update regarding the results of the community feedback, the consortium is now identifying potential commercial partnerships to inform the next STRC study. These potential commercial partnerships will allow the STRC to test an existing software application for CF management and support which was ranked number one by the community.

To view the STRC’s full report on their project, please click here. Thank you again to everyone who participated in this project - the STRC truly values the voice of the community and will continue to collaborate with people with CF and their families for its future research ideas!
National Institutes of Health (NIH) Rare Disease Survey 
The Rare Diseases Clinical Research Network, in collaboration with and funded by the National Institutes of Health, is conducting an online survey to help researchers understand the impact of the novel coronavirus (COVID-19) on the rare disease community. People with rare diseases and their caregivers were invited to participate in this survey to provide insight into how the pandemic has impacted them, including how it has affected their physical health, emotional health, availability of supplies, access to care, and other problems. To date, nearly 80 members of the CF community participated in the survey as part of 3,500 total respondents within the rare disease community. The study is ongoing, but more information about the study and its interim results are available here. 
Sharing Insights & Experiences of Life with CF Through the Blog
Check out these recent blog posts by Community Voice members! Community Voice currently has 128 members who have written 281 posts since the CF Community Blog launched!
Interested in sharing your story? The CF Community Blog wants to hear from you.
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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