Hello, Scott Sands here! You may know me from my personal blog, SCOTT SANDS ALIVE, or from Facebook, or Twitter, or e-mail, or this Yahoo group called DMD Pioneers.

Like the rest of my DMD brothers, I am not exactly healthy by any means. In fact, I am the living definition of a physical wreck. Wait, did I say "living"? Indeed, despite everything I have been through with this rotten disease, I have somehow miraculously managed to keep chugging along. I have the wheelchair thing, the scoliosis thing, the dysphagia thing, the macroglossia thing, and the muscle-wasting thing. But wait, there's more! I have a tracheostomy tube jammed in my neck through which I receive a full-time flow of air from a ventilator. I have an ICD (pacemaker/defibrillator) in my chest, and I am a sitting duck just waiting for that device to shock the living daylights out of me at any moment. Yep, my heart isn't exactly in the best condition, but hey, it's still beating, so that's a good thing.

Besides the machines, devices and countless medications that keep this rickety, old, deformed, broken body going, a positive attitude is the key to my being.  I never let this disease keep me down, nor do I allow it to prevent my accomplishments or shatter my dreams. I consider myself a stubborn old bugger who refuses to give up, wane or go down without a fight.  I am 43-years-young going on 44, 45, 46, 47...well, you get the idea. My older brother, Joseph, wasn't as fortunate. He only made it to 15 before DMD claimed his soul. But I vowed many years ago to get enough out of my life for the both of us, and I know he would be proud.

I am a college graduate with a degree in journalism, published writer and amateur photographer. I have an extraordinary zest for life, and I appreciate every minute of every day. Life as a man with Duchenne is short, so I take nothing for granted and push myself to the limits whenever I can. Born and raised in Queens, New York, I now worship the sun in the land of Disney and the giant mouse - Orlando, Florida. If you yearn for more details, add me as a friend on Facebook or check out my blog at www.scottsandsalive.com.

Cheers!

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.