Our Cycle for Life Story
CF Cycle for Lifeis a unique event that empowers me, along with other cyclists across the nation to take action and help find a cure for cystic fibrosis.
I have decided to embark on starting my own CF Cycle for Life team because of the great strides with new medications. These medications have given me the oppurtunity to get into biking on a regular basis with being on Trikafta/Other vertex equivilent drugs for the past 3 years. It has not only given me the oppurtunity to bike, but go back to school and have a regular hectic life like other 31 year olds out there! So I would love for my family and friends to join me and bike this summer into the fall and keep track of your miles.
Usually Cycle for life would be an in person event in Middletown CT, but because of Covid, we will be riding virtually while raising money for everyone with CF, to raise money to ensure those with CF going forward will have a have the fulfilling life, much like I have been able to have over the past 3 years. YES my life was very fulfilling prior to Trikafta and VX659 (Trikafta equivlent drug) however it was harder to do daily acitivies and working full time was not a full possibility, my days were surrounded by doing things and resting after the things I had just done. Of course I may still have to rest, as everyone does from time to time, but I now bounce back from daily tiring activitives quicker and I beleieve everyone with CF should have the same chances in life going forward.
There are thousands of mutations of CF not everyone is able to beneifit from Trikafta. As Trikfata is specifically used for those with CF that have the mutation Delta F 508 (I have Two copies) or 508 Delta F. Each person with CF has pair of mutations, one from each parent, I have two of the same mutations. But with many unknown mutations there is still a lot of research to be done to find a cure and modulators for the other mutations and those living with Cystic fibrosis. The exciting news has been more and more people are living into adulthood which has not been a new exciting development for the cystic Fibrosis Foundation and Cystic Fibrosis Community.
I hope all my friends and family can join and donate. I realize My mom has been raising money through the spring, so small donations are always welocme and always mean the world to me and the CFF Community! I hope to hear/see you riding!