Our Cycle for Life Story

WELCOME TO THE MADDIE MOCKINGBIRD'S!! We hope you will join the team! A bit about me aka Maddie below! 

 

Since 2018 I have been Lucky enough to be on some form of Cystic Fibrosis (CF) modulator. Prior to Trikafta being FDA approved I was on VX659. VX659 was in trials alongside trikafta, In my own opinion they both worked amazingly. But only one was able to be fully pushed through to open market availability. The dream is to one day have a cure for CF, but a more realistic goal in the meantime is to have options for modulators for all the different types of Cystic Fibrosis Mutations. I am lucky enough to have two copies of the most common One; Delta F508 or F508 Delta. But there are thousands of different mutations out there and many people waiting for their own kind of Trikafta.

Despite the amazing medications we can still get sick with CF issues. In December I was on IVS for the majority of the month, the longest I think I have ever been on IVs without a break. I was constantly checking if I had covid or any other virus, all of them kept coming back as nothing. In the end it was really just a CF exacerbation. I was able to do it all from home without any hospital stays which I would greatly say is thanks to Trikafta and of course my support of family and friends.

The amazing meds are helping a great deal of people with CF, but there is still more work to do, we are biking to raise money towards more research to help fund CF patients to keep living longer lives. And not just live longer but thrive while living longer. Being able to travel, work, and have a family.

This Year I am also the CF Ambassador for the CT cycle for life which is an honor, I hope to be able to show the CF community that our group here in CT is proud to show up and raise as much as I can for my CF community. I am riding in Person on May 14th for Cycle for life! We will be riding from Two roads in Stratford. I am very excited to ride in person for a Cystic Fibrosis fundraiser as I haven't done an in Person CF bike fundraiser since I was in Middle school. This year I will be biking 30 Miles, and I hope to see you all out there! If you are able to donate any amount that you are comfortable with is greatly appreciated. If you are able to bike with us and can join that way, I look forward to seeing you all there.