Not Today DMD!

Join us in our race to raise awareness and hopefully someday bring an END to Duchenne!

Our Story:

In the summer of 2021, Mason and Dawson were both diagnosed with Duchenne Muscular Dystrophy (DMD) — a rare, progressive genetic disorder characterized by severe muscle degeneration. In individuals with DMD, the body lacks a crucial protein called dystrophin, which is essential for muscle repair and function. Without dystrophin, muscles gradually break down at an accelerated rate.

The natural progression of Duchenne typically begins around the age of 7, when gross motor skills decline, and children may require increasing assistance to move around. By the ages of 10 to 12, most individuals with DMD lose the ability to walk and require the use of a wheelchair. Because every muscle in the body is affected — including those involved in breathing and heart function — the disease ultimately impacts all areas of physical ability. Currently, the average life expectancy for individuals with DMD extends into their 30s, though advancements in care and research continue to offer hope for improved outcomes.

There is hope on the horizon for Duchenne Muscular Dystrophy patients. Recent advancements in gene therapy offer promising potential, and we are optimistic that these innovations will allow Mason and Dawson to maintain their mobility into adulthood. Currently, both boys are following a steroid treatment regimen as part of their care plan.

Mason has participated in a gene therapy clinical trial, which, while not a cure, represents a significant step forward in the fight against Duchenne. In addition to this, he is receiving weekly IV infusions aimed at combating the progression of the disease. Dawson, on the other hand, is taking a temporary break from these infusions with hopes of joining a gene therapy trial later this year.

The future is full of possibilities, and we remain hopeful that Duchenne Muscular Dystrophy will one day be eradicated in our boys’ lifetime.