Timothy and Andrew Revell are two brothers born with Duchenne muscular dystrophy (DMD), a rare neuromuscular disorder that sees the progressive wasting and weakness of the muscles. This condition has no cure, meaning that it is eventually fatal. To fight this fate, the boys’ parents, Tim and Laura, have begun fundraising and connecting with DMD organizations. In fact, Tim will soon run a marathon to raise money for CureDuchenne.

About Duchenne Muscular Dystrophy (DMD)

Duchenne muscular dystrophy is one of the nine forms of muscular dystrophy. Affected individuals experience progressive muscle weakness and wasting due to a lack of dystrophin. Symptoms include issues with motor skills, muscle weakness, falling, fatigue, issues with changing positions, problems walking, learning disabilities, and eventually heart disease and respiratory failure. All of these effects are caused by a mutation passed down on the X chromosome in a recessive pattern. This is why males are more likely to be affected than females. There is currently no cure for this condition, but treatments can help to manage symptoms.

Running for a Cure

Tim and Laura were not about to accept the prognosis given to their sons; they began to look for advocacy organizations or other resources that could help them. After some searching, they found CureDuchenne, a nonprofit that raises awareness, funds research, and searches for a cure.

To support the organization and his sons, Tim will put on his running shoes and run the Austin Marathon at the end of this month. As of now, he is on track to make over $200,000 in donations for CureDuchenne.

Interviewing Tim

One of the first questions Tim was asked focused on his sons’ diagnoses. Focusing on its impact on his family, he said that they were initially shocked and bewildered before getting to work to fight the situation. They didn’t know what DMD was upon diagnosis, so the first step was understanding the research and accepting the lack of a cure.

When asked about the support received after learning of his sons’ condition, Tim noted that their doctors were not too helpful. They could not offer viable advice, and the specialist that was recommended couldn’t do much better. In the end, it was the internet that connected the Revells to Dr. Brenda Wong in Cincinnati, a specialist that was able to offer more help. They found CureDuchenne online as well.

The conversation then turned to clinical trials, and Tim related that each of his sons has participated in two studies. They can be very demanding, forcing participants to travel and take time off of work and school. At times, the results aren’t even positive. While they can be stressful, they are absolutely necessary for the search for a cure.

Lastly, the interview turned to the upcoming run. Tim acknowledges that raising money and awareness are essential to finding a cure, and the Austin Marathon is the perfect way for him to do both. As of now, his family has raised around four million dollars for their cause, and they won’t rest until a cure is found.

Looking Forward

The final question that Tim was asked focused on advice for rare disease patients who have just received their diagnosis. He wants them to know that they are not alone; advocacy organizations and other patients will be there for support.

Additionally, he notes that hope is found within oneself. As time passes, hope and hard work will pay off. He believes that his efforts will see a payoff soon.

Read more about the Revells here.