Monthly Results Update

Dear Community Voice member, 
Welcome to the March 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.

Coronavirus (COVID-19) Update & Resources
As public health officials have been assessing the risk of the coronavirus (COVID-19), the CF Foundation has been closely monitoring the spread of the virus to evaluate the potential implications for people with cystic fibrosis and their families. With the help of questions and feedback from people with CF and their families, the COVID-19 Community Questions and Answers resource was developed to provide information from the CDC and steps that everyone can take to keep the CF community safe (also available in Spanish here). For specific questions to your particular situation, please contact your care team or Compass.
Also, make sure to check out the latest information, updates, and resources from the Foundation’s President and CEO, Michael Boyle, MD and watch the latest recording of the CF Community Happiness Hour hosted by the Adult Advisory Council to hear about how we’re finding joy during these unprecedented times, plus tips and tricks for working from home, parenting, and self-care.
Please visit cff.org regularly for the latest resources and updates from the Foundation.

SIMPLIFY Study Material Review
As more people with CF begin taking cystic fibrosis transmembrane conductance regulator (CFTR) modulators, they are more frequently asking clinicians about which treatments and therapies they can stop. CF researchers have been working with the Foundation to develop a national study, SIMPLIFY, which will assess which medications people with CF could potentially stop taking once they start on a CFTR modulator. Community Voice members participated in a document review to share their feedback on the study’s research participant information and consent form to help ensure that the document gives potential participants all the information they need to understand why the research is being done and what it will involve.
Thank you to everyone who helped inform a crucial component of this study, which is anticipated to begin enrollment through the Clinical Trial Finder later this year.

Early Nutrition and Growth for Your Young Child with Cystic Fibrosis:

Spanish Translated Resource Review
CF is often thought of as a lung disease, but it also affects other parts of the body including the stomach and intestines. To help Spanish-speaking parents learn how CF can impact their child’s nutrition and growth, three members of the Spanish Language Community Review Committee reviewed the resource, Early Nutrition and Growth for Young Children with CF (Nutrición y crecimiento tempranos en los niños pequeños con fibrosos quística). This resource not only provides information about how CF affects the gastrointestinal system, but also discusses why nutrition is important and what parents can do to help their children grow.
View the English and the Spanish version of the resource, and click here to find more information on nutrition and CF. To find more educational materials in Spanish, please click here.

CF Health Insurance Study
The CF Foundation, together with investigators at The George Washington University, recently concluded the second phase of a landmark study to understand health insurance coverage, access to care, and cost for people with CF and their families. Thanks to the help of more than 1,800 members of the CF community who participated in the survey, the data has already been used to create the Foundation’s Food Security Committee and inform regulatory comments, letters to health insurance payers, and advocacy efforts on Capitol Hill. Analyses from the survey are still underway and will continually help shape the Foundation’s policy priorities and Compass programming. Thank you to everyone who participated!

March on the Hill:

More than 200 Advocates Amplified the Need for New Antibiotics on Capitol Hill
Late last month, more than 200 CF advocates came together in Washington, D.C. to advocate for the CF community during the Foundation’s 14th annual March on the Hill. During their time on Capitol Hill, advocates asked for Congress’s help in bringing forth new antibiotics.
Additionally, advocates from around the country, led by Tré La Rosa and Katie Fielding, both adults living with CF, sent more than 13,000 messages to their lawmakers during the Foundation’s annual Online Day of Action. Thank you to everyone who helped advocate during this year’s March on the Hill!

Writing for the CF Community Blog
Check out these recent blog posts by Community Voice members! Community Voice currently has 105 members who have written 264 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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