Last updated on May 21st, 2015 at 11:58 am
In the past few years, Team ShelbyUSA has walked, climbed, hiked and biked to fight cystic fibrosis. Now, it is building the first Team ShelbyUSA Running Team. This will be the first-ever CF running event for Team ShelbyUSA and the Cystic Fibrosis (CF) Foundation, Orange County Chapter. It will take place in Long Beach, California, on Oct. 11.
Shelby Klug is the “Shelby” in the team name. She is the teenaged daughter of Unified Grocers CMO Sue Klug. Shelby Klug suffers with CF and has long been a supporter and ambassador to find a cure.
The straight-‘A’ student is nearing the end of her junior year at Orange Lutheran High School. She is taking several honors and advanced placement courses and enjoys music and drama classes. She also has fun playing with her dog, Macie, and hanging out with her friends. She continues to advocate for Cystic Fibrosis and will again be the keynote speaker again at the CF Foundation’s Pipeline to a Cure on July 11 in Huntington Beach, California.
Shelby gets up for school at 4 a.m. every day in order to take all of her medications and get her breathing treatments completed. Treatments also are performed after school and prior to bedtime. She takes about 50 pills per day and nebulizes three medications during each of her breathing treatments. Her last hospitalization was in March and hopes are that she can remain infection-free so she can enjoy her summer vacation.
Last spring, Shelby was among 1,000 people worldwide who participated in the Phase III clinical trial of the combination drug therapy (Vertex 770/809), which is targeted at correcting her specific genetic defect. The clinical trial results showed a lot of promise, but didn’t offer as strong an outcome as hoped. Shelby’s lung function is deteriorating. The CF Foundation and Vertex Pharmaceuticals now are beginning a triple protocol (Vertex 770/809/661).
For supporters who wish to participate in the CF running event, email Shaina Flesser ([email protected]) with a race preference (5K, half-marathon or full marathon). Flesser will send participants sign-up instructions and an event code for their chosen race. Once runners are signed up at the event site, they can send out requests for donations. If needed, contact Cynthia McCloud ([email protected]) for help composing donation letters. The fundraising minimum is $250 per participant.
Those interested in helping but not running may donate to the team.
Cystic fibrosis (CF) is a life-threatening genetic disease that primarily affects the lungs and digestive system of an estimated 30,000 children and adults in the U.S. In the 1950s, few children with CF lived to attend elementary school. Since then, tremendous progress has been made in understanding and treating CF, which has led to dramatic improvements in the length and quality of life. Today, individuals with CF can now expect to live into their 30s, 40s and beyond.
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment and ensuring access to high-quality, specialized care.
