We are thrilled to bring our team, Aria's Army...Jack'd Up back to the Cystic Fibrosis Foundation's Great Strides walk again this year on Saturday, April 29 at Cedar Crest College in Allentown, PA ! It is hard to believe, but this will be our family's 11th year participating in this event and more than a decade since first receiving Aria's diagnosis during my pregnancy with her and over 7 years since receiving Jack's diagnosis when he was only a few days old. Yet somehow, the sting of those diagnoses remains fresh. When I think back to the day when we first received Aria's CF diagnosis, Brandon and I have never been more scared for what the future would hold for our sweet baby girl. We were new parents, new to this disease and terrified of the road we were about to walk. But throughout all of it, we were hopeful. A few years later, we welcomed our sweet Jack into the world and were told that, despite all of our wishing, hoping and praying, he too has CF. Once again, our world came crashing down around us and we were terrified, but still hopeful. We have fought alongside our babies every step of the way to do everything we can to keep them healthy, but the reality is their future and quality of life remains uncertain as CF is a progressive disease that can change course at any moment. We feel incredibly fortunate for the recent medical advancements and new medications that are having amazing impact on those with CF. It has now been over 2 years since Trikafta, a drug that treats the underlying cause of CF, was approved for kids age 6-11. Aria started taking it immediately and Jack followed suit when he turned 6 over a year ago. Aria has since had a follow up sweat test (the gold standard in diagnosing CF) and her results were nothing short of incredible. Trikafta and other “miracle drugs” that are in the current R&D pipeline give us hope, but it is not a cure and the reality is that tens of thousands of children and adults are still living with, and dying of Cystic Fibrosis. However, it is because of the persistency and dedication of the Cystic Fibrosis Foundation and because of people like you, that I am more hopeful than ever for the future of Aria and Jack and for those with Cystic Fibrosis. Please stand alongside of us, stand with Aria and Jack to let them know you support them and that you support our family. Join us for the Great Strides Walk on April 29, or simply make a donation so that someday CF will stand for CURE FOUND. How can I donate? You can click "Donate to a Team Member" to simply donate to a member of team "Aria's Army...Jack'd Up"
Also, it is very important that you REGISTER if you plan to walk, virtually or in person this year!
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.