Welcome to my Page
How is Nolan doing? Nolan was diagnosed with CF at 8 days old, in 2011. In January, 2017 he was diagnosed with Liver Disease. As of his December 2017 annual appt, his tests all came back ok. He was put on another nebulizer treatment/daily, an appetite stimulant to help gain weight and has been taking ORKAMBI since January. Orkambi is known as one of the miracle drugs for CF, so that combined with his appetite pill has helped him gain more weight in the past 5 months than the last 2 years. Daily, Nolan does 4 nebulizer treatments (totaling 60 minutes), 2 vest treatments (totaling 40 minutes) and takes almost 20 pills daily.
Nolan’s Gene is Double Delta f508. This mutation is the most common with 80% of the CF population having it. They have funded research for a new medicine which would offset some symptoms of CF with this mutation -- ORKAMBI. Nolan is currently taking this and we have seen improvement, however we're hoping Symdeko becomes approved soon for his age group, as this is an even better miracle drug for his mutation!!
Who is Nolan outside of this diagnosis? Nolan is a soccer and t-ball player. He's obsessed with football and can't wait for the NFL to start. He loves to play his Grandpa's Wii -- his favorite is Mario Kart. As any other kiddo, he loves the iPad, playing outside, going for bike rides w/ Mom, fishing w/ Dad, mini golfing, bowling, SkyZone and Jak's. He has a love for his cousins that is outside this world and loves to have someone to play with outside of Mom and Dad! (ha). He loves Pizza Hut thin crust Pepperoni Pizza and mozzarella sticks. He likes sherbet over ice cream, Wendy's over McD's and he has a strong sweet tooth, like both Mom and Dad.
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CF is a rare genetic disease found in about 30,000 people in the U.S. It causes persistent lung infections and limits the ability to breath over time. Those living with this disease are moms, dads, sisters, brothers, daughters, sons, friends and co-workers, all struggling every day just to breathe and live a normal, healthy life. I ride for them and hope you will support me in my efforts.
Breakthrough treatments have added years to the lives of people with cystic fibrosis. Today the median predicted survival age is close to 40. This is a dramatic improvement from the 1950s, when a child with CF rarely lived long enough to attend elementary school. Because of tremendous advancements in research and care, many people with CF are living long enough to realize their dreams of attending college, pursuing careers, getting married, and having kids.
While there has been significant progress in treating this disease, there is still no cure and too many lives are cut far too short. By participating in CF Cycle for Life, I am taking my ride to the next level and helping add tomorrows to the lives of people living with cystic fibrosis today. Will you join me? Support me by making a donation to my CF Climb fundraising campaign today!
CF Cycle for Life is a unique event that empowers cyclists to take action and demonstrate their fight in finding a cure for cystic fibrosis in a tangible, yet emotional way.
Help US reach OUR fundraising goal!