Inaugural run/walk for Bryan boys to be held September 24
By Garrett Ammesmaki,
The inaugural Bryan Boys Communi-Tea 5k run/walk is scheduled for September 24 at Tea City Park.
The event is to support Sawyer and Wesley Bryan, who were diagnosed with Duchenes Muscular Dystrophy (DMD), a fatal muscle wasting disease with no current cure.
Though it’s too late to pre-register for a guaranteed wrist band and t-shirt, walkers or runners can register up until the run/walk starts on September 24.
The 5K starts at Tea City Park with walk-in registration and packet pickup from 7:30 am to 8:45 am. Announcements will be at 8:45, with the run/walk beginning at 9 am.
Walk-in registration is $40 for an adult and $30 for a child (ages 5 to 18).
The funds will go toward continued research and development of treatment for the Bryan boys, as well as others who are suffering from fatal diseases.
After their sons were diagnosed with DMD in 2019, JeanAnn and Beau Bryan teamed up with Cure Rare Disease (CRD), a nonprofit biotech organization based in Boston, Massachusetts. CRD’s work for treating rare diseases includes targeting them with gene replacement and gene editing technologies as well as customized therapeutics for patients.
Last year, they organized an event that included a silent auction at Squealer’s Smoke Shack and have organized other fundraising events. So far, they have raised upwards to $140,000. But that barely puts a dent in the costly development and creation of customized medicine, Beau said.
Once a treatment is developed for their boys, it will cost millions of dollars to administer it to both Sawyer and Wesley.
DMD is the most common fatal genetic disorder diagnosed in childhood, affecting 1 in every 3,500 male births. Those afflicted with it lose muscle throughout their life and typically lose the ability to walk between the ages of 10 and 12. They normally do not survive their mid twenties.
The diagnosis of DMD runs a spectrum, with some seeing more severe symptoms early on and others experiencing struggles later on.
“Thankfully Duchenne life hasn’t hit (Sawyer and Wesley) very hard yet and most of their days are just like other kids, with a few exceptions,” said JeanAnn in a blog post. “Sawyer and Wesley are still mobile and able to run, play and participate in many activities, albeit a little slower and they tire easily.”
Though their current symptoms are not too extreme, the outcome for Sawyer and Wesley is inevitable. But the Bryan family hasn’t given up hope.
“Sawyer’s muscle biopsy is currently in the hands of the very scientists that are working on the development of a treatment specifically for him and his brother,” Beau said. “But it takes time and funds for these scientists to continue their life-saving work.”
The Bryan family have been members of the Tea community since 2008. Sawyer and Wesley are both students at Venture Elementary.