Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year).  Duchenne results in progressive loss of muscle strength and is caused by a mutation in the gene that encodes for dystrophin.  The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs.  Young men with Duchenne typically live into their late twenties.  Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation.

What’s my stake in Duchenne?   In April of 2008 my 2nd oldest son was diagnosed with Duchenne Muscular Dystrophy.  Caleb is 9 this year and an amazing boy!  He’s smart, dedicated, loves math & video games.  He really cares for the people around him.

Caleb goes to the MDA clinic twice a year as well as going to a pulmonologist  and cardiologist twice a year.  Last summer he got a wheel chair that he has progressively spent more time in as it has become harder for him to walk.  There are some scary prospects for the future that have to be address but he is also full of life and we are all about living. There are also amazing things happening in research right now.   Here are a few of the cool things going:

• ParentProjectMD – takes a comprehensive approach in the fight against Duchenne-funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options.  This organization (the people) have had a deep impact on me and my family.
  • EndDuchenne – an offshoot of PPMD dedicated to raising awareness and money for research.
• Winheld’s World – chronicles Josh’s daily experiences in living with DMD and with a disability in general. He also uses the blog to promote his autobiography, Worth the Ride: My Journey with Duchenne Muscular Dystrophy (iUniverse, 2009).
• Scott Sands Alive – Scott Sands blog – a 43 year old man living with DMD.  Check out his FAQ.
• Darius Goes West – In 2005, Darius Weems, and his eleven best friends left their hometown of Athens, GA. They set a course for California, where Darius hoped to raise awareness for his disease, Duchenne Muscular Dystrophy (DMD), by convincing MTV to customize his wheelchair on the hit show, Pimp my Ride.  Buy a DVD . . . $17 goes to Muscular Dystrophy $3 makes more DVDs.
• MDA – provides comprehensive health care and support services, advocacy and education.
• and now YOU!  Be the vehicle, tell everyone you know about DMD and how they can help through prayer, friendship, awareness and funding towards a cure.

Finally, “We will end duchenne, but we have to do it together.”  Pat Furlong, Parent Project MD.