Welcome to our annual Great Strides letter and update on the O'Leary family's goal of finding a cure for cystic fibrosis. To say we are living in a strange time is an understatement. Everything seems to have changed. But at least one factor in our lives remains the same. Casey has cystic fibrosis, and that will not change until a CURE IS FOUND!
There has been incredible progress in the science to cure CF. Currently 90% of CF patients have access to a drug that significantly improves their condition. These patients still have CF, but by taking these oral meds their symptoms decrease dramatically and as a result they are living longer lives. This is fantastic news. However, due to the specifics of Casey's genetic makeup, Casey is in the 10% of patients who are not eligible to take these life changing drugs. Fortunately, the Cystic Fibrosis Foundation in now focusing on how to reach that 10%.
The big goal however, remains to find a cure for ALL cystic fibrosis patients. We are close, but we are not there yet. And we will not stop until CF stands for CURE FOUND!
Once again we are asking you to help fund this life saving research. CF is an orphan disease which means that almost all of the money needed for research comes from private donations. Our family has poured our energy into asking for financial help and raising awareness. We are walking in Great Strides twice this year - May 4 and June 4.
Thank you for your support in the past. We hope that you can help us again this year and until we are able to say CF STANDS FOR CURE FOUND. We will not stop "until it's done"!
Please click the links at left to donate and sign up to walk if you wish. If you would prefer to send a check, please make it out to Cystic Fibrosis Foudation and send to us at 5805 Searl Terrace, Bethesda, MD 20816.
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.