Wednesday, March 11, 2009

Making Up For Lost Time

"The Future Depends on What We Do in the Present"
- Mahatma Gandhi

In their first newsletter, published in October 2008, FSHD Global Research Foundation in Australia clearly states their mission - "to make up for lost time" for those with FSH Muscular Dystrophy. As Bill Moss, the Global Research founder aptly states, "Many people are of the misguided belief that a cure for one of the 30 plus different types of muscular dystrophies is a cure for all dystrophies. Unfortunately this is not the case. As a result of this misconception, very little research has been undertaken into the causes of FSHD."

Due to years of neglect, the missions of both Pacific Northwest Friends of FSH Research and that of the Global Research Foundation are very similar - to promote and support FSH research. The research of FSH Muscular Dystrophy has been ignored, leaving those that suffer with this disabling condition little hope that a treatment or cure was possible.

With research, there is hope!

(October 2008 Volume 1, Issue 1) FSHD Global Research Foundation is an international not-for profit charity dedicated to finding a treatment and cure for Facio-Scapulo-Humeral Dystrophy (FSHD), which is the second most common form of muscular dystrophy seen in adults and the third most common genetic hereditary disease seen in skeletal muscle.

Initially, sufferers experience wasting or weakness of facial muscles, scapula and upper arm muscles which may later progress to other muscle groups in the legs and back that will impact on a person’s ability to walk. The disease may progress slowly over many decades.

While FSHD is one of the most common muscular dystrophy types, research into it is a staggering 20 years behind that of the most common form.....

"The Future Depends on What We Do in the Present" - the future of my son, people living with FSH today and all those which will be diagnosed with FSH tomorrow will be affected by the actions we take today.

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