Eli Eli O

Hello,

This is our 14th year participating in Great Strides! Fourteen...it seems like only yesterday when we got the devastating diagnosis that Eli had CF. It was an incredibly scary time, but it also felt like a time to be very hopeful. Everyone in the CF community was very excited about the development of these drugs that were touted to be "game-changers" for those living with CF. These drugs were in the early phases of clinical trials and they were showing amazing results. It took about ten more years for Eli to be eligible for any of those drugs, and he's now on the 3rd drug of it's kind. The first two didn't do much for him, and in fact he had to stop taking the 1st one as it seemed to be making him worse. However, about a year and a half ago he started to take Trikafta, a similar drug to the first two, but with a far more amazing results for most people. While the effects have been more subtle for Eli than most, it has had an undeniably positive impact.

Prior to starting Trikafta, if he got sick with a cold or other respiratory illness, he required an antibiotic to kick the residual cough. Many times that would turn into several rounds of antibiotics. Eventually his lung function would drop to the point where he required hospitalization for IV antibiotics. Since he has been on Trikafta he has not needed even oral antibiotics once!!!! He has been able to recover and get back to baseline on his own. This would have never happened pre-Trikafta! He has also had a much easier time gaining weight, which has always been a struggle for him. Trikafta was made possible largely due to donations to the CFF....donations from friends and family that selflessly give year after year to help continue to develop and improve these life changing drugs.

Although Trikafta and other similar drugs have had a profound effect on many of those living with CF, our work is NOT done! These drugs only work for certain genetic mutations, so there are many that are still waiting for their turn. We are not leaving anyone behind! Treatments, even with the addition of these drugs, are still a several-hour a day commitment. We will continue to stride for those currently without options and for the continual improvement on our current roster of treatments.

Please walk with us or make a donation to continue to fight in helping me keep Eli healthy, as well as the entire CF community.

Thank you for helping us add tomorrows and to fight this devastating disease. Without you and your support, we would not be so hopeful and confident that one day CF will stand for CURE FOUND!!