According to the ALS Association Texas Chapter, approximately 30,000 Americans have ALS at any time.
ALS, or amyotrophic lateral sclerosis, is a disease that affects the nerve cells that control voluntary movement.
Research shows that the average person with ALS is expected to survive 3 to 5 years from being diagnosed with the disease.
Stephen Hawking defied the odds, and lived more than 50 years.
“Stephen Hawking has been a symbol of hope for people and family members of people with ALS,” said Collin Hadley, a Fort Worth man who has lived with ALS for the past 3-and-a-half years.
Hadley, a husband and father with 2 children, said he is optimistic that a cure will be found for the disease one day.
“I have no doubt that one day families won’t have to look at a 3 to 5 year life span. They will be able to live happily along,” he said.
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Researchers at the ALS Therapy Development Institute said just this past year a new medication was approved that can help patients maintain their function for several months longer otherwise.
There’s also about 40 other potential treatments being studied in clinical trials.
Researchers said it is impossible to know how fast or slow an individual case of ALS will go.
Hadley is participating in the “Precision Medicine Program” where researchers are trying to understand why there are different progression rates. They hope this information will help them eventually develop more specific treatment approaches for the various subtypes of ALS.
“It’s very exciting. It’s very wonderful knowing you have so many individuals dedicated to this debilitating disease,” Hadley said.
