I was born with a bowel obstruction which required surgery at 3 days old, then I was officially diagnosed with Cystic Fibrosis at 6 weeks of age. I will have to take pancreatic enzymes before every meal and snack for the rest of my life to digest my food. I do breathing treatments two times per day to help break up the thick, sticky mucous that clogs my lungs. I have a gastronomy button in my stomach, and do overnight feeds just to gain/maintain weight.
The Cystic Fibrosis Foundation is doing incredible work researching breakthrough treatments, and assists in getting affordable medications. Last year I started a breakthrough drug, Symdeko (a CFTR Modulator), which helps to restore some of the underlying function which causes CF. The year before that I was on another breakthrough CFTR Modulator called Orkambi which brought my salt-chloride number down 30 points (from 100 to 70)! Currently the median life expectancy 41 years old which has increased substantially in the past 25 years. CF patients often did not live long enough to reach elementary school age, but I started Kindergarten in 2019!!
However, there is still so much work to be done. There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I walk for them and hope you will support me in my efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me and join our team The James Gang Rides Again to help add tomorrows!
We have three National Teams available to join in your area:
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.