New registry for ALS patients collects data in hopes of discovering disease’s cause

Matthew Ruchinski likely doesn’t completely understand what ALS means. The 4-year-old from Pennsylvania just knows that his dad is sick — and that he plans to walk two miles in an event Saturday that will benefit people who have the disease, reports the Allentown Morning Call. Matthew’s dad, James, was just 35 and in the process of adopting the boy when he was diagnosed with the fatal neurogenerative disease.

About 5,600 Americans each year are diagnosed with ALS, officially called amyotrophic lateral sclerosis, or Lou Gehrig’s Disease, and life expectancy after diagnosis is just two to five years, according to the ALS Assn.

Causes aren’t known, though 5% to 10% of ALS patients carry a distinctive gene mutation. Read the Los Angeles Times report about some researchers who claim to have found a link between ALS and traumatic brain injuries.

The federal National ALS Registry launched Wednesday may provide some clues. The registry collects data from ALS patients on a voluntary basis and then looks for disease patterns, changes, etc., over time. Learn more about the ALS Registry at the Centers for Disease Prevention and Control website.

--Mary Forgione / Los Angeles Times