Monthly Results Update

Dear Community Voice member, 
Welcome to the September edition of the Monthly Results Update!
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 have any questions or feedback on how we can improve these digests, please contact us at communityvoice@cff.org. 

2019 North American Cystic Fibrosis Conference:

Register to Watch the Latest in CF Research
The North American Cystic Fibrosis Conference (NACFC) is happening October 31 – November 2! To increase the accessibility of medical and research information important to the CF community, the NACFC Program Planning Committee selected the sessions that will be livestreamed based on feedback from a CF community survey.

New this year, a chat feature has been added to the platform for all NACFC livestreamed sessions (excluding the plenary sessions which will be on Facebook Live) to enhance the online viewer experience. A big thank you to six Community Voice members who will serve as this year’s community chat moderators!

Community-selected livestreamed sessions will be available for free in real-time and via online archive after the conference. Regardless if a session is livestreamed, nearly all presentations (slide and audio) will be available online after the conference. Check out cff.org/WatchNACFC to watch!

To register, click on the button below. For more information about NACFC or to view past sessions, please visit nacfconference.org.
Register Here
Keep an eye out for next month’s edition to learn about all the ways Community Voice members have impacted projects that will be presented at NACFC!

Infection Research Initiative Webpage Survey & Focus Group
The Infection Research Initiative was launched in 2018 as a commitment to identify enhanced ways to detect, diagnose, prevent, and treat infections related to cystic fibrosis. The CF community has been an integral piece of nearly every aspect of this initiative. Most recently, participants of a focus group and survey prioritized what information was most important to highlight on the page and helped ensure that that the information was cohesive and easy to understand. In particular, they called out the need to share with the latest about specific kinds of infections which has now been added to the page. Learn more about the initiative and the work that’s being done through the newly redesigned webpage.

Success with Therapies Research Consortium (STRC) Steering Committee

The STRC Steering Committee is responsible for facilitating the clinical study of behavioral interventions to help sustain daily care and improve CF disease self-management while optimizing health outcomes and quality of life. Over 350 invitations to apply for two positions on the committee were sent to adults with CF and parents of people with CF in Community Voice. The committee received a diverse pool of 27 candidates. After careful review of each submitted application and several interviews, the committee recruited Melanie Abdelnour, an adult with CF, and Sylvia Mazuera, a parent of a young adult with CF, to join the committee to serve for a three-year term.
Melanie Abdelnour
Sylvia Mazuera

Patient Registry Infographic Survey

People with cystic fibrosis are continuing to live longer, healthier lives, and data from the Patient Registry supports this general trend. To reflect on the data that has been collected as of 2018, the CF Foundation is developing an infographic that focuses on several topics relating to life with CF. More than 100 Community Voice members provided feedback on the infographic and identified areas of improvement so that the data is easier to understand. The infographic is currently being revised based on the feedback and a final version will be available in a future update.

Medicare Survey & Interviews

Medicare is a federal health insurance program that provides coverage for millions of Americans each year. To better understand the unique financial and coverage challenges people with CF face when it comes to Medicare, the CF Foundation’s policy and advocacy team conducted a survey to learn more about the experiences of those who are covered under the program. A total of 54 Community Voice members completed the survey and six participated in additional interviews to provide in-depth clarification about their experiences. Their insights are now being used to help guide the Foundation’s policy work, Compass programming, and information about Medicare for people with CF which will be available to the CF community later this year.

PROMISE Study Focus Group

The PROMISE study is an observational research study led by CF researchers to better understand how treatment with a new CFTR modulator may affect people with CF and impact their future clinical care. The PROMISE study team created an information sheet to help inform people with CF about the study and explain the overall purpose of the study, basic eligibility criteria, and an overview of the study schedule. Members of Research Voice participated in a focus group to provide their feedback on the sheet and help ensure the resource is easy to understand and covers the key information a person would want to know when considering participation in this study.
Participants provided feedback on areas that needed clarification, including more detail on the length of study visits, compensation, and the overall purpose and impact of the study. Click here to view the improved information sheet. Thank you to those who participated in this project!

Writing for the CF Community Blog

Check out these recent blog posts by Community Voice members! Community Voice currently has 92 members who have written 213 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.
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.