My Great Strides Story
A year ago today (3/15) we got the call that J’s newborn screening was flagged for Cystic Fibrosis. The phone call lasted less than 2 minutes, but it marked the beginning of an unexpected journey that has been simultaneously full of life and full of moments so crushing they take your breath away.
Cystic Fibrosis (CF) is a progressive, genetic disease that affects the lungs, pancreas and other organs. CF affects each person differently, but here are some of the ways it has shown up for us: A simple cold that should have taken a few days to clear lasted for weeks and we have had to fight every day to keep it out of his lungs. He has to take enzymes before every meal, so that he can gain weight and CF also makes his skin extra salty.
Care and treatment for CF has come a LONG way, but our fight isn’t over. To aid in this fight, we are hosting our very first fundraiser!
J has directly benefited from the medical advancements supported by the Cystic Fibrosis Foundation. By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history as we fight for the health and well-being of all individuals with CF.
Here’s the many ways you can lend us a hand with this goal:
1. Buy a t-shirt! $5 from each t-shirt sale will be donated to the Cystic Fibrosis Foundation and count towards our overall fundraising goal (Shoutout to Sassy Up Boutique for helping us with the shirts!)
Here’s the link for that: https://docs.google.com/.../1cO2ernBGNe4uUyCD.../viewform...
2. Join our team! Donations are not required to join, but absolutely encouraged if you are interested. Every dollar donated directly impacts advancements in care that have helped our kiddo. Here’s the link: https://fightcf.cff.org/.../GreatStrides/113_Sooner_Tulsa...
3. Finally, mark your calendars and plan to join our motley crew in-person or virtually at the walk on May 20th @ Centennial Park! Pirate attire encouraged! Details about the event can be found here: https://fightcf.cff.org/site/TR?pg=entry&fr_id=9722
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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.