The latest updates for September 15, 2022


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One Week Until ROSE UP!


ROSE UP ([link removed]), a virtual fundraising event created and led by adults with cystic fibrosis is one week away! Register today to earn
great rewards ([link removed])
and help raise funds and awareness through creative, meaningful acts. Thanks to an anonymous donor, all donations will be matched up to $250,000, now through October 31, 2022, or whenever the match is completed.*

Register for ROSE UP » ([link removed])


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FDA Approves Orkambi for Children with CF Ages 1 to 2 Years

In case you missed it,
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for children with cystic fibrosis ages 1-2 years who have two F508del mutations. With this approval, more than 250 children are now eligible for Orkambi, and it is the only modulator therapy available to very young children with these mutations.

Read more » ([link removed])




Learn How to Manage Advanced Cystic Fibrosis Lung Disease


Advanced cystic fibrosis lung disease ([link removed])
can be best managed by knowing what to expect when partnering with your CF care team and others in managing your care, taking advantage of all the resources available for you and those who support you, and belonging to a community to share experiences and encouragement when you need it.

Living with advanced CF lung disease » ([link removed])


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A Letter to Myself

After opening a time capsule that she made as a child, Morgan Barrett, an adult living with cystic fibrosis,
wrote a letter to her childhood self ([link removed])
explaining how great her life is at 30.

Read Morgan ([link removed])


*Beginning August 1, all gifts in support of ROSE UP will be matched, dollar for dollar, up to $250,000 through October 31, 2022, or when the match is completed, whichever comes first. Donations received in excess of the matching goal will be used to support the CF Foundation’s mission.

WE WILL NOT REST UNTIL WE FIND A CURE


DONATE ([link removed])


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www.cff.org ([link removed])

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