The latest information for July 7, 2022


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We Want to Hear From You

If you have cystic fibrosis and are over the age of 18 or you are the parent of a child with CF,
we want to hear about your or your child’s health-related needs and quality of life ([link removed]). We are conducting a study to better understand changes people with CF are experiencing not only in their physical care and symptoms, but also in their personal lives, including their emotional, social, and financial well-being. Results will inform future CF care and research. Please take this survey by July 30. Respondents may choose to enter a random drawing for a $25 Amazon gift card.

Take the survey » ([link removed])


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Teens Come Back Together to Advocate for PASTEUR

More than 60 teen advocates from across the country — 25 of whom live with CF — participated in the
Foundation’s 14th Annual Teen Advocacy Day ([link removed])
on June 23. In more than 135 meetings with members of Congress, teens asked their lawmakers to co-sponsor and pass the PASTEUR Act, a bipartisan proposal that, if passed, would revitalize the global marketplace for novel antibiotics.

Read the news story » ([link removed])




Do You Have a Disaster and Emergency Preparedness Plan?

Planning for a natural disaster or emergency is especially crucial when someone in your home is living with a chronic illness like cystic fibrosis.
Our disaster and emergency preparedness plan ([link removed]) can help take the stress out of planning.

Make or update your plan » ([link removed])


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New Spanish Webinar on YouTube

In case you missed it,
our genetic therapies webinar in Spanish is now available on YouTube ([link removed]). Hear cystic fibrosis researchers provide an overview of genetic therapies, starting with the basics, in addition to an audience Q&A. We encourage you to share this recording with anyone who might find it valuable.

Watch on YouTube » ([link removed])


How a Small Regional Hospital Helped Me Realize the Value of CF Care

Cystic fibrosis is a complex disease and requires a team approach. On the CF Community Blog, Laura Steuer shares how she didn’t realize how much
her CF care team has her back ([link removed])
until she stayed in a hospital where the staff had little knowledge of the needs of someone living with cystic fibrosis.

Read Laura ([link removed])


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WE WILL NOT REST UNTIL WE FIND A CURE


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