Greetings, fellow Community Voice members! With another year behind us, we feel like now is the perfect time to present the first Community Voice Newsletter - a way for you to learn about how our participation is making an impact on this amazing community! Each newsletter will feature our latest success stories, member spotlights, upcoming opportunities, and other news. We want to keep you in the loop, so expect to see this newsletter in your inbox 2-3 times a year!
As you read through, let us know if there's anything you'd like to add, see, or simply join in on. Thank you for all of your participation this past year and we hope you enjoy reading about the incredible things we have accomplished together.
Best, 
The Community Voice Editorial Board

Feature Story - Become a Trailblazer


Our CF community is already blazing the trail toward more treatments and therapies by participating in innovative clinical trials across the country. The new CF Trailblazer campaign empowers people with CF, and their support systems, to learn more about clinical trials, and supports care teams and chapters with new resources and materials. Members of Community Voice helped shape the direction and content of the campaign and gave feedback on new educational resources about trials.
Check out the new CF Trailblazer campaign.

A Look at Your Impact In...

CF Science
•  Understanding the different types of CF mutations and modulator drugs can be confusing for those with and without CF. A new handout, Know Your CFTR Mutations, was informed by Community Voice members and helps simplify what is happening in CF at the cellular level. This handout is now being used in clinics and online to help people with CF understand their CFTR mutation. 
•  Anyone thinking about joining a clinical trial for the first time could use some help navigating the process. Community Voice members helped narrow down the “need to knows” for a new educational resource about CF Clinical Trials that will be rolled out at CF care centers.  
•  The Foundation supports a wide range of research that focuses on not only improving the quality of life for people with CF, but also on pushing the frontiers of science in the search for a cure. A six-member focus group gave their input on the new Research We Fund section on CFF.org to help people with CF and their families gain a better understanding of the Foundation's current research initiatives.  
•  Based on the votes of over 1,900 CF community members from the Insight CF Project, the CF Foundation is incorporating community feedback in its annual Clinical Research grants to better address the research topics you said were most important to you. The topic that received the most votes - respiratory microorganisms - was also the focus of a Facebook Live broadcast at the North American CF Conference (NACFC) on infections and antibiotics. 
CF Care
•  Some CF-related topics can be hard to discuss openly with family, friends, or care teams. Recently, Community Voice members took part in a focus group to discuss "taboo topics" like hemoptysis, mental health, and life expectancy. This focus group led to a survey about how hemoptysis, or coughing up blood, is one of the scariest complications of cystic fibrosis and influences people's lives both emotionally and physically. The responses were so powerful that a clinician asked to share the anonymized results of the survey at a session at this year's NACFC. A blog post is now being developed from these responses.
•  The partnerships between people with CF, their families, and CF care team members are critical to successfully manage this disease. By participating in a survey, nearly 150 members of Community Voice helped the Foundation's Partnerships for Sustaining Daily Care (PSDC) initiative inform the development of potential new resources to help foster productive conversations about CF care that align personal goals with health goals.
•  It is important for adults with CF to have a say and feel involved in the development of resources that are tailored for them. Community Voice members gave feedback and suggested improvements for the Adult Guide to Cystic Fibrosis, an easy-to-use reference on many aspects of adult life with CF. Feedback on this guide will be used to inform how we update this information and make it more accessible through CFF.org.
Community Programs
•  You may have heard about CF Peer Connect, the CF Foundation’s peer mentoring program for adults with CF –especially since many of you participated in focus groups, served on the start-up committee, and provided input on the promotional video. Learn more and sign-up to request a mentor today.
• More than 550 adults with CF were able to connect with each other through this year's virtual events, including our second annual BreatheCon and two CF MiniCons on young adult transitions and the transplant journey. Community Voice members chaired, volunteered as session facilitators, and participated in each of these events designed by and for adults with CF.

More Ways to Use Your Voice


Join Research Voice
  • Research Voice is a subgroup of Community Voice designed to embed the voice of the community into research projects. Members are getting involved in all aspects of research, including reviewing study protocols and study safety, and disseminating lay summaries of study results. Sign-up for Research Voice! 

Member Spotlight


Emma D’Agostino is an adult with CF who joined Community Voice in January 2015. 
Tell us about yourself!
I'm originally from Atlanta, but I recently graduated from the University of North Carolina at Chapel Hill with majors in biology and chemistry (Go Heels!). I returned to my home city after graduation, and I am currently getting a Ph.D. in biochemistry from Emory University. 
What do you like to do in your free time?
I enjoy Irish dancing, horseback riding, playing the flute, and cuddling with my two cats. 
In what ways do you get involved with the CF Community? 
Through Community Voice, I had the opportunity to be a founding member of the Insight CF Registry Research Project. I currently lead the Research Summary Review Committee, which publishes summaries of CF research articles for the CF community.  
Stay tuned to learn more about your fellow Community Voice members with each issue! 

In Other Community Voice News


Check out these recent blog posts by other Community Voice members! Community Voice currently has 61 members who have written 111 posts since the CF Community Blog launched. 
Want to contribute to the CF Community Blog? Fill out this questionnaire.

Other Ways to Get Involved


  • Interested in participating in a clinical trial? Use the Clinical Trial Finder to find trials that you may be eligible for and are open for enrollment.  
  • Take Action! Learn how you can get involved in CF advocacy efforts. 
  • Mark your calendars for upcoming fundraising and virtual events, including the new CF FamilyCon on June 3, and watch recordings from last month’s NACFC.

Help Spread the Word About Community Voice!

Manage your preferences | Opt out using TrueRemove™
Got this as a forward? Sign up to receive our future emails.
View this email online.
4550 Montgomery Ave Suite 1100 N
Bethesda, MD | 20814 US
This email was sent to .
To continue receiving our emails, add us to your address book.
powered by emma
Subscribe to our email list.