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How Long Do People Live With ALS?  

Genetic and Sporadic?  

Who can develop ALS? 

How many People are Diagnosed Each Year, and 
How Many People are Living with ALS?


The average term of living with ALS is 2 to 5 years. Twenty percent live five years or more; up to ten percent will survive more than ten years. In a few known cases, ALS has ceased its progression, though there is no scientific understanding as to how and why this happens. A small percentage of people die within one year of their diagnosis.

Curtis died one year and four days after his diagnosis.

10% of all ALS cases have been proven to be genetic. 90% of all ALS cases are sporadic, the most common form  Sporadic ALS means that anyone, at anytime, can develop ALS, and there is no known definitive cause or family history.

Curtis’ case was familial.

ALS affects people of all races, all ethnicities, all ages, and thus, anyone, at any time, can be affected by ALS. Typically, people between the ages of 40 and 70 develop ALS, but ALS does affect persons in their twenties and thirties.

Curtis’ symptoms began after his 25th birthday.  Curtis conversed with one college-aged ALS victim, and heard of another.  Curtis and Heidi learned of many people in their twenties and thirties with ALS.

More than 5,000 cases of ALS are diagnosed each year, and at any given time as many as 30,000 Americans are living with ALS.  Back to What Is ALS?