In October 2013, at 26 years old, Beth Hebron was diagnosed with amyotrophic lateral sclerosis, or ALS, a terminal neurodegenerative disease that sets off a progression of debilitating side effects: muscle weakness, paralysis and respiratory failure. There is no treatment and no cure. The average age a person develops ALS is between 40 and 70, and they are typically given two to five years to live. Hebron is one of the few young people living with the disease and her life expectancy remains undetermined.

ALS has been in the news lately because of the swell of Ice Bucket Challenge videos popping up on the Internet. What began as a dare for pro-golfer Chris Kennedy turned into a national movement. Athletes, celebrities, and prominent business leaders have been dumping buckets of freezing water on their heads for ALS. It’s had an impact: Between July 29 and August 21, the ALS Association has received $41.8 million in donations, and 739,275 new donors. In the same period last year, it raised $2.1 million.

The videos began as a way to raise awareness about a disease with no cure. Hebron is one of an estimated 30,000 Americans currently living with ALS. Here, she shares her story.


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ALS still better then ebola