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International Organization Rooted in Wheeling
Posted Wednesday, November 4, 2009 ; 08:00 PM | View Comments | Post Comment
Updated Thursday, November 5, 2009; 01:24 PM


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Stiff Person Syndrome Association aimed at helping people with condition.

By Jim Forbes
Email | Bio | Other Stories by Jim Forbes

WHEELING -- An international organization focused on those affected by a chronic illness has its roots in Wheeling.

Director Mike West, says Stiff Person Syndrome Association was formed by passionate individuals who no longer want to be invisible.

The S.P.S.A. was founded by people who suffer from this chronic illness, their families, friends, and caretakers. He is one of the founders who was diagnosed on July 12, 2001, with Stiff Person Syndrome.

West says, "I could not comprehend the episodes of spasms that occurred in twenty-four hours a month prior. Here I was, a thirty seven year old male, who became one of six hundred people in the United States diagnosed with Stiff Person Syndrome. What was I to do?"

Stiff Person Syndrome primarily affects individuals in their third to fifth decades of life. He has been determined to address the statistics head on, as have others who have been afflicted with this terminal illness.

The S.P.S.A. exists to provide support for all of those whose lives are touched by Stiff Person Syndrome. Our goals also include increasing public awareness as well as raising funds for SPS research by utilizing the resources and talents of our world wide members.

Related Links:
   - Stiff Person Syndrome Website

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User Comment
Connie
11/5/09 at 1:00 AM
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Great info, Mike! I, too, am a sufferer of Stiff Person Syndrome. I also belong to the association, as well. I want to reach out to the public and ask for your support in helping us find a CURE for this HORRIBLY PROGRESSIVE DISEASE. "NORD", or the National Organization for Rare Diseases has $16,000 set aside for research to be done. But, the sad part is they need a MINIMUM of $35,000 to have a study started. We ARE a LONG way off yet. I would like to reach out to ALL of the viewers and people reading this website that YOU CAN MAKE A TAX DEDUCTIBLE DONATION to be able to help us help NORD find a CURE for us! You can either do it through our Association, OR through NORD directly! You can go to www.rarediseases.org and on your check write "Donation for Stiff Person Syndrome Studies". We would SO appreciate your help!

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