DMD Pioneers.org

Hello All and welcome to the lives of those of us with Duchenne Muscular Dystrophy or DMD for short.  We call ourselves DMD Pioneers because we have long surpassed the projected “prognosis,” of this relentless disease I refer to as the monster within.  Anyway, thank you for joining us as we give our first hand look at the […]

My thirty four year journey living with DMD has taken me on a path filled with experiences both good and bad.  Growing up in Jamestown North Dakota, I had as normal of a childhood as one with DMD can have.  I attended regular public school and graduated high school in 1993. After high school, I […]

I am John Herrmann. At 41, I am one of the old guys with Duchenne Muscular Dystrophy, but not the oldest. As a result of DMD, I use a ventilator 24/7, use a feeding tube to eat, and a power wheelchair to get around. I live in Rancho Santa Fe, California in San Diiego County. […]

My partner and I have been together for over fourteen years. We live in a nice little house in the suburbs, with a fenced in yard, two dogs, and hope to have children someday. If you didn’t know about my disability, we would just be your average couple making our way in the world. However, […]

I live in South Western region of the Canadian province of Ontario. I’m 33 years old and live with both my parents in a small three bedroom home with a good sized yard. It has a small man made pond of my design and a good sized vegetable garden. I have a younger sister who […]

The site is now configured to automatically send a tweet once a new article is published.  You can find DMD Pioneers on Twitter at http://twitter.com/DMDPioneers.

All the previous content from the old website has been added back to the website. The homepage has been configured as a blog and will soon be used as a blog written by fellow DMD Pioneers. From time to time we may invite guest bloggers to share their unique perspective.

Basically, non-invasive ventilation is a method of providing breathing assistance to people with Duchenne Muscular Dystrophy (DMD), and others with diminished respiratory capacity, without the use of a tracheostomy. The common method for dealing with lowered respiration in DMD is to place the person on a ventilator by putting a hole in one’s throat and attaching a […]

My name is Patricia Schmidt and my son Bob Sutter, was diagnosed with DMD when he was 3 1/2 yrs. old. He’s now 21. I believe it is a miracle that he is still alive. When Bob was 15 1/2 years old he came down with pneumonia. The pulmonary doctor told me that I would […]

During the spring of 2001, I went through a period of losing strength. I used to take my wheelchair all over town, loved to go for Sunday strolls and drove my chair 4 miles to and from school. I live about 6 blocks from our local Wal-Mart and the city had redone the sidewalk. One […]