Money buys science, and science saves lives.
Lilian was diagnosed with Cystic Fibrosis, a hereditary disease affecting primarily the pancreas, lungs, and digestive system at just 2 weeks old. Terrified and heartbroken, Brian and I decided almost immediately that the current life expectancy of 50 years is unacceptable. This is not OK.
Now ELEVEN (!?) years old, Lilian is a spunky, adventurous, and fiery little girl! She looks perfectly healthy, but inside her body there's a battle being fought every day. In June 2015 Lilian added the new drug Kalydeco to her daily regimen. Kalydeco targets CF at a cellular level, slowing the progression of the disease in her body. Two years ago she began taking the newest CF modulator, Trikafta, and we are amazed at the results. She is growing, active, and thriving. Lilian's lungs are clear as of her last check up, but as she ages (and exacerbated by common colds, infections, naturally occurring bacteria, etc.) her lung function will deteriorate. To what extent, we simply can't predict.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. We walk for Lilian.
All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising. This is our way of coping with and fighting this disease - we hope you'll join our fight!
Team Lilibug all the way.
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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.