News for Release:
Tuesday, May 13 2014
Contact: Scott Griffin
SHELBY COUNTY PARENTS GIVE THEIR SON THE GIFT OF A LIFETIME
BIRMINGHAM, ALABAMA – Gabe Griffin of Shelby County is turning 9 years old today, and his parents are giving him the gift of a lifetime. Two cyclists will be taking Gabe’s message of hope across America in July and August with the goal of raising awareness and money to fund research to cure Gabe’s rare disorder.
Scott and Traci Griffin’s twin son suffers from a genetic mutation called Duchenne Muscular Dystrophy. Duchenne Muscular Dystrophy (DMD) is caused by an absence of dystrophin, a protein that helps keep the muscles intact. The onset of this fatal disorder occurs during early childhood and causes generalized weakness and muscle wasting that increases over time. While medical advances have led to some very promising clinical trials, to date there is no cure and no one has survived.
Scott said, “At 9 years old, Gabe walks, hugs, breathes, and feeds himself like any other typical child that age, but that will be taken away in the next few years if we don’t find a cure. Without a cure, Gabe is expected by doctors to be in a wheelchair by the time he is 10 to 12 years old and lose his life around the age of 20. A promising drug has slowed the progression of this disorder for 12 children who have been on it for 156 weeks and counting. Unfortunately, the Food and Drug Administration has not used their authority to grant access to the many other children like Gabe who suffer from Duchenne. Traci and I are willing to accept all risks to save our son and we will do anything to keep from having to put our son in a wheelchair in a couple of years.”
The Griffin’s run a foundation called Hope for Gabe (H4G), and the bicycle ride is being called Ride4Gabe. Michael Staley, an Alabama resident who lives in Washington, D.C., and Indiana University student Wes Bates of Aurora, Colorado, will begin cycling from Astoria, Oregon on June 28. They will cross the country, averaging about 75 miles a day, and eventually cross Alabama from north to south, completing Ride4Gabe in Mobile by mid-August. Both riders say they are passionate about educating the public about this muscle-killing disorder that affects one in 3,500 young boys.
Michael Staley said, “At the age when a little boy begins to fully develop into a man with strong muscles, Gabe is going to be experiencing the opposite. Wes and I feel led to educate people about this disorder and we believe that Duchenne can be stopped and Gabe’s life can be saved. We are asking community leaders and cyclists in each city and state along our route to get involved.”
The volunteer cyclists and their small support team are working to educate people across America about DMD, and the funds they raise will be used to advance current research. To ensure the majority of the money goes to research, the foundation is requesting donations of a motorhome and SUV for the ride, camping gear, cycling gear, food, and assistive technology to guide and safeguard the cyclists.
Scott Griffin said, “Traci and I live every day trying to help ‘fix’ Gabe’s problem. Our community has rallied around our efforts, and we are ready to take our message across America through Ride4Gabe.”
Ride4Gabe planning is nearly complete and the foundation website will be updated soon with specific details about the ride. You can follow the ride on Facebook (Hope for Gabe) and Twitter (@hopeforgabe).
To get involved or make a donation, visit www.hopeforgabe.org or call Scott Griffin at (205) 542-1069.