Duchenne Muscular Dystrophy

What do you know about Duchenne Muscular Dystrophy? Most of you will probably say "what is it?"

There are a few in our area that are affected by this terrible disease but how many of you have done any research on it? Children with Duchenne are born seemingly healthy and decline over time usually losing their ability to walk around the age of 12. It is a progressive neuromuscular disorder that causes the loss of motor, pulmonary and cardiac function and premature death. It is the most common lethal pediatric genetic disorder. Duchenne has no cure.

There is much info and fundraising for things such as ALS, Alzheimers, American Cancer Society to name a few but nothing for Duchenne MD. We need to change that so a few plans are in place for the coming months and year. Events may include a walk/run, golf tournament and more.

There is info in the Roseau Times-Region this week promoting Duchenne Awareness Day which is on September 7th. This basically is an overview of what this disease is with some key facts which will provide a better understanding for all. The plan is to get some literature into the elementary school to help the younger children understand this disease.

The Jett Foundation is a great resource for families with Duchenne also. The Jett Foundation was founded by one mom on a mission to save her son, Jett. This foundation has raised over $16 million dollars for promising biomedical Duchenne research. Since their inception, they have shifted their primary focus to direct service programs for families. They provide family support, education progams and assistance with accessibility equipment.

By the way, I know a great kid that has Duchenne and his name is Conner Samson of Roseau. He doesn't let this disease get him down. He always has a big smile on his face!

Pam Hetteen