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No limits. Finding a cure for ALS

What is ALS

What is ALS?

ALS is a progressive fatal neurodegenerative illness that attacks motor neurons. When motor neurons die, the ability of the brain to control muscle movement is lost, leading to paralysis. Unable to function, muscles atrophy. Eventually, all muscles under voluntary control are affected and patients in time lose their ability to walk, talk, swallow, and breathe. During this horrible process, the mind remains completely intact observing the loss of each function. When the diaphragm and chest muscles fail, patients stop breathing on their own. The majority of people with ALS die of respiratory failure within 3 to 5 years of noticing the symptoms.

What is A.L.S. or Lou Gehrig’s Disease ? (Wayne Lampe)

Statistics

At any given time, 1 out of 10,000 individuals has ALS, with the odds of 1:1000 to contract the disease. Every year, more than 100,000 are diagnosed with ALS and it is the cause of death of a similar number of individuals. Latest estimates of the number of people affected with ALS around the world exceed 600,000. ALS is not contagious and affects people from all ethnic backgrounds, usually between the ages 40-60, although cases of younger individuals with ALS are known. In Israel, at least 700 people are doomed to die due to ALS – twice as many as the annual death toll due to car accidents. ALS is 100% fatal – every patient will die of ALS, usually 3-5 years post diagnosis. Prize4Life is determined to alter these devastating statistics.

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What causes ALS?

The root cause of the disease is unknown. Only 5 – 10% of the cases can be linked to a family history of ALS. In the early 1990’s, a team of researchers was able to identify a defective gene, SOD1, on chromosome 21 as the cause of several  of the familial cases. This also enabled the development of animal models of the disease for testing potential treatments.

Not enough research and treatment

According to the US National Institute of Health (NIH), ALS is an orphan disease because it affects less than 200,000 people in the US. This gives the disease special status in accordance with the Orphan Drug Act of 1983: Because treatment development for orphan diseases are financially disadvantageous relative to other diseases, the government will reward companies that develop drugs for orphan diseases with tax reductions and a guaranteed patent monopoly for up to seven years. Drugs have been developed under this act for conditions like cystic fibrosis and HIV/AIDS.

Until recently there was only one drug approved for treatment of ALS. On May 2017, the United States Food and Drug Administration (FDA) approved Edaravone (Radicava) for the treatment of ALS. Of note, the efficacy of both drugs is limited or requires further investigation.

Current ALS research is conducted primarily in academic research centers and is funded through government grants and nonprofit donations. Tens of millions of dollars are spent on ALS research fellowships and grants each year. All of these efforts have resulted in numerous scientific findings and publications about the disease, but no new effective treatments have made it from the laboratory to the patient. Prize4Life will change this…

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8 Vardia st. apt. 61 Haifa @Avi Kremer

Tel: 054-3031271

Fax: 077-8969614

office@prize4life.org

התרומות לעמותה מוכרות לצרכי מס ע”פ סעיף 46 א’ לפקודת מס הכנסה

 

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