Our daughter Merritt was born November 5, 2022 and was diagnosed with cystic fibrosis that December after her newborn screening indicated elevated IRT levels and subsequent sweat chloride and genetic testing.
We are blessed that she had an early diagnosis and that with her mutations she is eligible for modulator therapy. Merritt began taking Kalydeco at 4 months old and we have a daily routine made up of airway clearance with the vest system and nebulizer treatments. Thanks to these treatments, Merritt has been doing great, but there is no cure for CF yet.
Many CFers aren't yet able to benefit from modulator therapy, and are waiting for therapies that will change their lives. Along with this, I’m passionate about early detection through newborn screening and early intervention and care. Our team walks in honor of Merritt, our beautiful, vibrant baby girl, and we are raising money to find a cure for CF. Let’s make CF stand for Cure Found!!! #untilitsdone
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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.