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big announcement - thank you guys.

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  • big announcement - thank you guys.

    Good morning everyone.

    I just wanted to start this Friday off with a pretty big announcement. And I'm making this announcement because many of you guys, and people like you, have contributed to the Cystic Fibrosis Foundation. Yesterday the CEO of the CFF had a pretty big announcement... That's a big deal. Let me put that into perspective for you. 6.5 years ago on June 5th a pediatrician said to my wife "these kids are making it to 30 now".

    In 6.5 years, medical breakthroughs funded ENTIRELY by donations from people like you have given my daughters a chance at an extra DECADE on this earth. Guys, that's huge. What would you pay for one more day with your kids? You're all awesome. We are far from done. This is a median predicted age. So it's a bell curve. and it's for "children born today". The "average" age is much more grim (late 20's) but there's even more treatments in the pipeline. the newest combination is in stage 3 trials. i'm hoping to get Amelia my first kiddo enrolled in it. and Orkambi has just been submitted for children age 2-5.

    Big news guys. It's exciting and we are moving in the right direction. I wasn't full of it when i said you guys were funding the cure. It's happening. We will see it in our lifetime. and I'm going to do my damnest to make sure my kids see it in theirs. Anyway. Thank you everyone for everything you've contributed/done. The individual donations, the awesome companies that gave charitable donations for our events. Even the prayers. They're all adding up. Thank you from the bottom of my heart and from my family.


  • #2
    Great news, and that's only been in the last couple years. Just think how far the advancements will be when they're 30!
    You're not lost if you don't care where you are

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    • #3
      That is awesome news!!!! Brings a smile to your face for sure. Thanks for sharing Ryan.

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