Bay Area woman lobbying for passage of ALS bill

When Jamie Berry noticed a slight limp in her right foot in late May, she didn’t think much of it. Berry tends horses and drives tractors on the 80-acre ranch her family leases in San Jose’s Almaden Valley, and she was also busy with an 8-year-old daughter, five dogs and an excavation business she runs with her husband. So Berry ignored what she assumed was a minor sprain.

But after Berry limped for several weeks, her leg became visibly swollen. A trip to the emergency room led to a visit with a neurologist. “And then boom,” said Berry, 45. “They club you over the head with the worst diagnosis possible.”

On July 14, she was diagnosed with amyotrophic lateral sclerosis, or ALS. Often referred to as Lou Gehrig’s disease, it breaks down the nerve cells that control muscle movements. As the disease progresses, patients have trouble walking, speaking and breathing. Most die within two to five years.

Berry, however, quickly saw a ray of hope. Hours after receiving her diagnosis, she watched an online video of a West Virginia man with ALS who saw his symptoms disappear after taking part in a clinical trial for an experimental treatment. But Berry was heartbroken when she learned that despite strong evidence that the treatment is effective, it doesn’t yet have approval from the U.S. Food and Drug Administration and thus remains out of reach for suffering ALS patients.

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