Taylor Clair

A lot of happened since the last Great Strides! Jordy has gotten access to the “miracle” drug Trikafta. We just got results this past week that his body is responding tremendously after just 1 month of therapy. We are awaiting results of most recent tests. 

The past 12 months has been full of growth for all of us! A few years ago, I never thought we would be able to safely take Jordy an airplane for vacation, take him swimming, or to other public events. All of which we’ve been able to do! 

While we only typically share the “highlights” of Jordy - so much goes on behind the scenes to keep him healthy and make all the fun possible. A million medications, countless doctor appointments, blood draws & over 650 minutes spent in his airway clearance vest. 

We are only able to accomplish all of this with the help & support of our family, friends and care team. 

While our family is extremely grateful for Trikafta & the freedom is has given us, we cannot accept that this is the best that will be available during Jordy’s lifetime. For this reason, we will continue to do our part in raising awareness & fund for the Cystic Fibrosis Foundation! 

Thank you for your continued support! 

With love, 

The Clairs 

Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. We will not leave anyone behind.  

Please support me!

We are at a pivotal moment in the history of cystic fibrosis and your support matters. With your help, we can invest our resources in research today, while raising funds for tomorrow, to ensure we have what it takes to reach the finish line. Together, we can make CF stand for Cure Found. Please help me reach my fundraising goal!