Monthly Results Update
Dear Community Voice member, 
In the May edition of the Monthly Results Updates, we are happy to announce that Community Voice is now over 1,000 voices strong! Thank you for helping to make a difference in the lives of people with CF through your involvement with Community Voice. 

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. 

New Partnering Tool: Adult Care Checklist

A new partnering tool called the Adult Care Checklist is now available. This tool encourages care teams to partner with adults with CF to track tests and procedures related to specialized adult CF care. Several Community Voice members were involved with the development of CF clinical care guidelines that helped inform this resource. This resource was developed as part of an ongoing effort to help care teams implement clinical care guidelines and will be updated as new adult-specific recommendations are published.  

CF Adult Advisory Council (AAC)

We are excited to announce the newest members of the CF Adult Advisory Council (AAC).  More than 30 highly qualified Community Voice members applied for only six open positions.  The Board of Trustees approved the new members during their meeting in May and their terms will begin in June.  Congratulations to Katie Caul, Tara Goodwin, Brad Johns, Aimee Lecointre, Dan Schulke, and Betsy Sullivan! To learn more about the AAC, click here.

FamilyCon Topic Prioritization Survey

We would like to invite you to attend CF FamilyCon on Sunday, June 9! CF FamilyCon is a virtual event for members of the CF community to share their experiences of living with CF and loving the people who are in it with you.

Members of Community Voice helped prioritize the topics that will be presented and discussed at this year’s CF FamilyCon. Click here to find the survey results and click here to read the final agenda. Don’t forget to register by clicking on the button below!
Register for CF FamilyCon

TDN Spring Meeting:

Informing the Research Community

Four Community Voice members were invited to speak at the Therapeutics Development Network’s (TDN) Spring Meeting, a two-day conference held with all 92 clinical research centers within the network to share about the exciting work that is currently underway. Community Voice members Rachael Havey and Madeline Poranski spoke at two breakout sessions about the importance of partnering with the CF community in research projects, while Jonathan Standley and Dara Riva spoke on a panel about their personal experiences and perspectives on clinical research.

Writing for the CF Community Blog

Check out these recent blog posts by Community Voice members! Community Voice currently has 87 members who have written 201 posts since the CF Community Blog launched!
Want to contribute to the CF Community Blog? Fill out this questionnaire.
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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