ALS Is Stealing Their Bodies. These Moms and Dads Are Fighting to Keep Parenthood

The Ice Bucket Challenge in 2014 spread widely on social media and raised $220 million for ALS research, briefly making the acronym widely recognizable. Many people who participated later found it difficult to explain what ALS is, even though they had dumped ice water years earlier before their own diagnoses. ALS, also called Lou Gehrig’s disease, has long been viewed as an “old person’s disease,” yet it can occur in people in their 20s, 30s, and 40s. The average age of diagnosis is between 50 and 65. Research indicates military veterans face nearly double the risk later in life. About 90% of cases are sporadic with no known family history, and the disease affects people regardless of race, gender, or geography. More than 5,000 Americans are diagnosed each year, and 30,000 to 35,000 people live with ALS in the United States.

"Several people living with ALS, all interviewed for this story, admitted they had participated in the challenge themselves years earlier, long before their own diagnoses. At the time, they said, they barely understood the disease beyond the viral videos flooding their feeds. They certainly never imagined it could happen to them."

"For decades, ALS - amyotrophic lateral sclerosis, also known as Lou Gehrig's disease - carried the reputation of being an "old person's disease," something associated with elderly men. Although the average age of diagnosis falls between 50 and 65, ALS can strike people in their 20s, 30s and 40s."

"According to two research studies, Military veterans face nearly double the risk of developing it later in life. And while roughly 90 percent of cases appear sporadically, with no known family history, the disease does not discriminate by race, gender or geography."

"Although ALS is considered a rare disease, more than 5,000 Americans are diagnosed with it each year, according to the Centers for Disease Control and Prevention, and an estimated 30,000 to 35,000 people in the United States are currently living with the illness."

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