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Iranian Jewish Life in Los Angeles: Past and Present

Saba Soomekh, Author

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The Neuromuscular Disease Foundation: History

When was the foundation founded and what do they do?
The organization’s humble beginnings date to 2006. Today, it is at the forefront of the global fight against HIBM. The organization devotes endless time and resources to researching the disease in order to find treatments and prevent it from appearing in future generations of Iranian Jews. The researchers at NDF unanimously believe that finding a remedy for HIBM would pave the way for further medical developments capable of preventing other diseases that affect the muscular system, like Amyotrophic Lateral Sclerosis (ALS).

How was the disease discovered?
Dr. Zohar Argov first discovered it in Israel. HIBM develops in the human body due to a deformation in the structure of a gene, which goes by the name GNE. GNE is designed to process the enzyme that helps with the secretion of Sialic acid. Sialic acid is a key promoter of proper muscle movement in the body. When the muscles do not get enough Sialic acid, they begin to deteriorate gradually.
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