As many of you know, my son, Clay Catlin-Filippelli has been living with #cysticfibrosis for 26 years now. For the first 22 of those years, there was constant worry, constant treatments, constant doctor visits, and occasional hospitalizations.
Then the scientific version of a miracle occured--a critical therapy developed with support from the Cystic Fibrosis Foundation became available, and Clay's lung capacity shot up from below 80% to over 100%, effectively reversing a disease that was fatal, with a life expectancy of 34 years when Clay was born.
The only thing that is constant in his life now remains the treatments to continue clearing his lungs and to allow him to digest food, and he can count on living to an old age.
We have been fundraising for the foundation his entire life, for just the reason outlined above. So why are we still fundraising? Because the miracle treatment is not a cure, and there remain people with CF who are not responsive to this particular medication. So we continue with this difficult ask to our family and friends--please support as you can, with your thoughts and/or your money, so that one day CF will stand for "Cure Found"
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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.