They Bryans are our dear friends and Beau coached both his and our boys prior to the diagnosis. There is hope and they need our help.
Testimony from the Bryans:
We are The Bryans- Beau, JeanAnn, Sawyer (13) & Wesley (10) and we have called Tea, SD our home for the last 17 years. In 2019 both of our boys were diagnosed with Duchenne muscular dystrophy (DMD), a fatal muscle-wasting disease.
What is Duchenne Muscular Dystrophy (DMD)?
DMD is the most common, fatal genetic disorder diagnosed in childhood affecting 1 in every 3,500 male births. Boys with DMD lose muscle throughout their life, typically lose the ability to walk around age 10, and do not survive their mid-twenties. Rate of progression varies for each individual.
Is There A Cure?
With over 3,000 possible separate mutations in the dystrophin gene there is no cure-all. Our boys have an ultra-rare duplication within their gene, interrupting their body’s ability to produce the protein needed to maintain and support healthy muscle. The best hope for our boys is to receive a treatment via a therapy developed with their mutation in mind.
Who Is Cure Rare Disease (CRD)?
CRD is a non-profit biotech company based out of Woodbridge, CT that is making history by accelerating the pathway to life-saving gene therapies for people with rare neuromuscular diseases, who need them now. CRD and its collaborators are harnessing CRISPR technology to edit and correct mutated DNA to restore proper function to the dystrophin gene.
CRD and the Byran Boys
We teamed up with CRD in 2020, and since then, significant progress has been made on the development of Sawyer and Wesley’s treatment. A team of scientists have created a therapeutic for their mutation that is proving to be successful, and manufacturing is just around the corner!
How You Can Help
Manufacturing and dosing of the treatment takes time and money. It’s estimated that the treatment will cost $2.2 million dollars from start to finish, so raising funds is essential to continue this life-saving work. Please consider giving to the Bryan Boys and together we can give them a chance at a long, happy, and healthy life.
Thank you for supporting us as we raise money for the Bryan boys and Cure Rare Disease!
