I am happy to report that "Children and Young Adults with Muscular Dystrophy: An Annotated Bibliography" is available on the Muscular Dystrophy Association's website. The Annotated Bibliography is the first bibliography of books by and about persons with muscular dystrophy, according to the MDA. Funding for the annotated bibliography came from a Carnegie-Whitney Award from the American Library Association. Many of the books are about Duchenne muscular dystrophy.

I also have an opinion column, "Why We Need Books about People Like Me", in the Spring 2010 issue of Quest, MDA's national patient magazine. The article introduces the Annotated Bibliography.

Jacob Gapko is a Ph.D. student in library and information studies at the University of Wisconsin-Madison with DMD.

Hi. My name is Sean. I am a blogger and unpublished fiction writer from Vermont. That's the US state between NewYork and New Hampshire, to the geographically challenged.

I was diagnosed with Duchenne Muscular Dystrophy as a baby. My brother had been diagnosed before I was born, at 6 years old. My parents were already far too familiar with the evil disorder. Sadly, my brother died in 1981 of respiratory failure. I have been fighting the beast for almost 38 years. The battle has me battered and bruised, but I am not giving in.

I am ventilator dependant with a plastic tube in my throat called a tracheostomy. My computer is my life and I can be an active member of society via the internet. Technology is a wonderful thing!

Thanks for reading. To quote Arnold Scwartzeneger, "I'll be back."

I have been a member of the DMD Pioneers Mailing List on Yahoo! Groups from the beginning. Along the way I have been able to learn a lot of valuable information but most importantly I have been able to make a connection with so many incredible people with DMD and other similar conditions. Many of the friends I have met through DMD Pioneers are no longer with us but their pioneering spirit continues to live on in all of us who refuse to give up on living.

Nearing the age of 30, I have been blessed with exceptional health for someone with DMD. I have been fortunate to have a great team of physicians who are pioneers in their fields of practice. I know that this is not the case for everyone and it is often a struggle to find good doctors that understand the needs of those with DMD and similar conditions. But things are moving forward; as people with DMD continue to live longer new strategies are being developed that extend life and improve the quality of life for us.

For a long time the focus has been on curing the disease and not in the practical area of living with the disease. Let the researchers continue in the search for a cure, but while they go forward in their quest let us go on our own and discover the ways we can benefit each other.

I, along with the rest of the bloggers have come together to give a little bit of ourselves for the benefit of those living with Duchenne Muscular Dystrophy. From me, expect to hear about things that have worked for me, things that haven’t gone so well, news about DMD and observations I have made. You can also expect me blog about the light side of life and humor that goes along with it.  I will also provide updates about this website and other happenings in the group.

To learn more about me outside the context of this website, be sure to visit my personal website at jedicharles.com.

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 reffer to as the monster within.  Anyway, thank you for joining us as we give our first hand look at the lives of these Pioneers.  For this particular blog, you will be seeing things from my perspective on life as a Sufferer and Survivor of DMD.  Shall we get started?

My name is Michael Keen and I am 33 going on 34 this May; as I said earlier I have DMD.  I was supposed to be dead by now, but through my determination, I have deafeated the typical prognosis; that is refusing to accept that this monster would eventually kill me.  As a result of Respiratory Failure in 2005, I became Ventilator Dependend meaning I could no longer breath on my own without being hooked to a machine 24/7 365 days a year. I am what you call a duel diagnosis because I suffer from anther condition, Congestive Heart Failure (CHF) as a result of my weakened heart this monster caused, I was diagnosed following an Echocardiogram which is very much an ultrasound of a heart.  A normal heart has an Ejection Fraction , the unit of measure they use for determining how well the heart is pumping blood throughout my body, of 60-66; my Ejection Fraction (EF) is at a dangerous 17 percent with a mortality rate of about 70 percent; pretty scary stuff huh?  As a result of this high mortality rate, I have to get a device called an Internal Cardiac Defibulator (ICD).

Oh come on, had enough medical jargon already? Hold on folks just a few more terms; really really.

The ICD will shock my heart rhythm back to saftey should I go into Ventricular Tachycardia or V fib which would cause instant death for me yikes!  The Sergury is a relatively easy in the grand sceme of things, however having DMD complicates things a bit.  The procedure itself will take a good 2 hours provided there are no complications.  I cannot tolerate Anesthesia because of yet another condition, Malignant Hyperthermia (MH) which is a condition that my body temperature will go extremely high to like 108 degrees.  So to avoid the risk, I will be under conscientious sedation during the surgery; I will actually be awake during the entire sergury; boy I sure hope I don't feel a lot of pain.  Afteter the surgery, it's a guaranteed stay overnight in ICU for precautionary reasons; all this takes place April 30th.

One more thing I failed to mention.  Although I have DMD, I live independently with my wife in Waynesboro VA; I have a program called Technology Waiver with VA Medicaid that gives me 84 hours a week healthcare through nursing; thats 16 hours a day which is not bad.  I stay fairly busy and take my job as a pastor very seriousely.  I'm a fun loving guy undernerneath all the humaness and look foward to sharing my life with you.  Respectfully, Michael.

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 lived independently until 2002, when I developed respiratory failure, got trached, and was put on a vent.  The next three and half years of my life were spent in a nursing home until I moved to Missoula Montana in the fall of 2006 to live with friends.  I'm currently a sophomore journalism student at the University of Montana and hope to graduate in 2011.  In my spare time, I hang out with our 6 Pugs, do some photography, Facebook with friends/family, and enjoy the beauty of western Montana.

I'll be blogging about living independently while on a vent, my college experiences, disability advocacy, and everyday life with DMD.

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. At present, I live with my parents and have nursing care sixteen hours a day. My sister, niece and two nephews live nearby, and my brother lives up in San Francisco. I have a supportive and loving family. My life is fairly content, despite the ups and downs of DMD. I have adapted, adjusted, and accepted and refuse to feel sorry for myself. There is no retreat. no surrender to DMD. I enjoy life as much as I can. I like to read (mostly sci-fi, history, philosophy, religion and spirituality, current affairs, science), write, watching movies (sci-fi, history themed, westerns,comedy, drama, documentary, foreign), watching documentary shows on TV, listening to most types of music (especially rock, blues, jazz), goiing to concerts, going to museums, nature walks, watching sports (mostly baseball. Go Padres!). Right now I am single, and looking for a woman to spend the rest of my life with. I have just started getting into disability advocacy and assistive technology advocacy and look forward to giving back to society. If you want to know more about me, check out my blog, Life of John at www.johnrsf.blogspot.com

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 lives near by with her husband and two young sons. My life is a pretty tranquil and laid back, I am quite content with my books, music, and television programs. I am totally dependent on a wheelchair and I am also 100% dependent on a ventilator via tracheotomy. I also have a gastric feeding tube or more commonly known as a G-tube because I have difficulty chewing and swallowing solid food. I will be occasionally writing about aspects of living with Duchenne Muscular Dystrophy, such as the daily and long-term challenges I face as well the solutions I've found that help me overcome such challenges.

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 am a 33 year old male living with Duchenne muscular dystrophy who is wheelchair-bound and dependent upon non-invasive ventilation while I sleep and during much of the day.

This site is primarily for those of us who either have muscular dystrophy already or are already familiar with it, but for those who don't know, Duchenne muscular dystrophy is a progressively degenerative muscle-wasting disease that eventually results in severe physical disability. Skeletal muscles weaken throughout life, first making walking difficult, then later (usually by age 10-13) resulting in wheelchair reliance. In the past, it was unusual for many of us to make it into adulthood. My uncle passed away in his early 20s a few decades ago, and many thought that to be extraordinary at the time. Today, thanks to technological advances and pharmaceutical interventions, as well as innovations in medical protocols, many of us survive well into our 20s, 30s, and occasionally even 40s or 50s. This new generation of long-lived people with Duchenne muscular dystrophy is what we refer to when we use the term DMD Pioneers.

I'll likely be writing here about things that make life easier, like adaptive technology and other innovations, but also things that make life worth living in the first place. That can include anything from love and relationships to accessing video games and other entertainment. I might also occasionally write about what it means to be happy or content, and how that might relate to someone with a disability like ours. We have had a bumpy ride with Duchenne, but I am a happy person that loves life. You never know what it will bring next, only that it's almost always something interesting! I don't want to miss any of it.