The latest updates for May 11, 2023


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Kalydeco Approved for Children Ages 1-4 Months With Certain CF Mutations

Last week, the
U.S. Food and Drug Administration approved Kalydeco® (ivacaftor) for infants with cystic fibrosis ages 1 month to 4 months ([link removed])
who have certain mutations. Although this approval affects a very small number of infants, it is another important step in making sure that everyone with CF has a treatment for the underlying cause of their disease.

Read the announcement » ([link removed])


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CF Foundation Advocates to Protect Needs of People With CF in Post-Pandemic Medicaid Redeterminations

During the pandemic, the continuous coverage provision helped stave off lapses in health care coverage for people with cystic fibrosis who utilize Medicaid. With states' redetermination processes resuming, the
Foundation is advocating to limit coverage loss ([link removed])
and facilitate a smooth transition for all those impacted.

Read about the impact » ([link removed])


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Join Our Virtual National Fundraising Workshop

Mark your calendars for Wednesday, June 7 at 7 p.m. ET for
the first-ever national passion fundraising workshop ([link removed]). During this virtual workshop, attendees will receive a passion fundraising toolkit, hear from other Foundation volunteers, participate in breakout groups, and network with others in the CF community.

Register now » ([link removed])


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Changing Expectations: What Living Longer Means for Care

People with cystic fibrosis are living longer than ever before. The
median predicted survival for someone with CF is now 56 ([link removed]), meaning half of the people born between 2018 and 2022 are predicted to live to 56 years or more. On the CF Community Blog, Art Brace, a 57-year-old with CF, shares how his health needs are becoming more complex as he ages.


Read Art ([link removed])


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WE WILL NOT REST UNTIL WE FIND A CURE


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