On May 4, 2024 we will get together at Campus 805 for a walk and tailgate!
Desi was diagnosed with cystic fibrosis at 10 days old. Every day since then she has taken pills and completed medical treatments to help her body operate.
In May 4th we come together to celebrate how far research has come and together how far we can go!
Can’t walk with us on Saturday? No worries, you can still help fund research!
•To donate toward our goal click “Donate to Jamie and Ross”
OR
•Click “Join this Team”, be a virtual walker and invite friends to donate
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Plan to arrive at Campus 805 by 9:20. We will take a group picture, visit and kick off the (very short) walk.
We know this time of year is very very busy if you can only join us for 25 minutes we’d love to have you! Come for as little, or as long, as you’d like! This is a family friendly day!
PROOF YOUR GIFT MAKES AN IMPACT:
When Desi was born the median life expectancy was 38 years old. Now, 8 years later, the median life expectancy is 56 years old!!
Your donation is giving her (and us) what we we treasure in life- more milestones, more celebrating, more birthdays!
Thank You doesn't feel like enough.
Gratefully,
Jamie and Ross
Behind the scenes on why we find research:
775- how many pills Desi swallows every month. She takes these before each meal in order to give her body the ability to absorb fat and nutrients from food. She must eat a high calorie diet as putting on weight is a constant challenge and is directly linked to her lung function.
60- how many minutes a day are devoted to Airway Clearance Treatments when healthy. (120 minutes/day when sick) To do this she wears a vest and is connected to a machine that will shake her to help move the mucous in her lungs.
9- how many medications and supplements she is on to help her body function.
6 feet- The minimum distance Desi has to keep from others living with cystic fibrosis. She can't have playdates or get together with others that understand her life (due to infection control).
8- How old Desi is
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Everyday is a push to help Desi's body operate and to keep her healthy.
Thank you for the constant prayers, hugs and words of encouragement for our family.
-Jamie and Ross Roney
Instagram at @DrivingMissDesi
Email: TeamDrivingMissDesi@gmail.com
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.