Exploring New Horizons for Duchenne MD

DMD Pioneers is for people with Duchenne's muscular dystrophy who have beaten the odds and are continuing to thrive despite the upwards battle they face. This is our blog...

17 November 2015 - by ~ 2 Comments

Glossopharyngeal Breathing; What the heck is that?

ribbet

Glossopharyngeal breathing, also known as frog breathing or just GPB, is a method of breathing that people with weakened breathing muscles can use without mechanical intervention. Obviously this is no replacement for volume ventilators but it can be used in the event of ventilator failure or accidental disconnect. The technique is not as effective for […]

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06 June 2015 - by ~ 3 Comments

Guest Blog: Objects of Pity

Chris Fryer

The favourite topic of the late Australian comedian, Stella Young, who just happened to be disabled, was what she called “inspiration porn”. We have all seen those inspirational videos or pictures on Facebook that show people with serious disabilities battling against the odds to live a normal life. Stop feeling unhappy, this person doesn’t have […]

12 March 2015 - by ~ 1 Comment

Chris Webb: 1968 – 2015

Chris Webb: 1968-2015

DMD Pioneers remembers longtime member Chris Webb. Chris was well known to the Duchenne community and loved by many. He was an avid of heavy metal fan that attended many concerts and had many back stage opportunities to meet members of the bands he enjoyed. He was an accomplished poet who, in 2012, became a […]

23 February 2015 - by ~ 1 Comment

Life Expectancy of Duchenne

A message for parents of children with Duchenne muscular dystrophy. People with Duchenne muscular dystrophy can expect to live a great life full of family, friends and those they choose to spend with their time. They can expect to experience the good things in life and reach their goals and accomplish many things and not […]

01 August 2014 - by ~ 1 Comment

Scott Sands: 1966 – 2014

ScottSandsInMemoriam

“I am dealing solely in moments now, and my goal is to maintain my relentless desire to seize every single one of them! You see, moments accumulate and grow into futures, and futures comprise lifetimes. By focusing on moments, I can relish in looking back on them from a future that was never promised.” – […]

24 July 2014 - by ~ 0 Comments

Life and Breath – Planning for power failure guide

lifeandbreath

DMD Pathfinders, a newly formed charity in the UK, has just released a guide for planning in the event of a power failure for those who depend on ventilators and other vital medical equipment. The creation of the guide was prompted by the tragic deaths of two Australian men with Duchenne who died due to […]

22 May 2014 - by ~ 0 Comments

Word Painting: A new blog by John Herrmann

Our very own John Herrmann has started a new blog to showcase his poetry and creative prose. You can find his Word Painting blog at http://wordpaintingbyjohn.blogspot.com/

22 January 2014 - by ~ 1 Comment

Tom Mecke: 1960 – 2014

tommecke

DMD Pioneers would like to take a moment to remember Tom Mecke. Tom Mecke, 54, was one of the oldest known survivors of Duchenne muscular dystrophy and a true pioneer in the way he lived. Tom sadly passed away yesterday, on the night of his wedding day. Our thoughts and prayers go out to his […]

29 September 2013 - by ~ 1 Comment

Not Confined

John Herrmann

In countless articles and news stories about people with disabilities who are wheelchair users, the person is often referred to as being confined to a wheelchair. This phrase makes it seem that having to use a wheelchair is a horrible fate. It creates images in my mind of a person being chained to a wheelchair, […]

17 June 2013 - by ~ 0 Comments

Louie J. Boitano: 1949-2013

Louie J. Boitano

Louie J. Boitano, M.S., R.R.T.,  a true pioneer in the field of respiratory support for those with neuromuscular disease has died. He dedicated his life to the betterment to not only his patients but for all of those with neuromuscular disease through his calling as a respiratory care practitioner and researcher focused on noninvasive respiratory […]