Before Dave Huntley was diagnosed with ALS in 2013, he ran triathlons. Now he can't move his arms or his legs, and can't speak.
ALS is a neurological disease that attacks the nerve cells. It has no cure, and is usually fatal.
But Huntley's wife, Linda Clark, discovered a drug known as GM604 that she said shows promise in early clinical trials.
Clark has formed an organization called Hope NOW For ALS. Clark and other group members are in Washington, D.C., this week to hold a rally and meet with the Food and Drug Administration. They want the agency to give accelerated approval to GM604 so that her husband and others with ALS could have access to the drug before it's too late.
Clark conceded the drug might not be effective at all.
“But at least it gives patients the chance at life, if it should work, and that’s very important," she said. "It’s also very important that people have hope, and hope is a very powerful drug as well.”
It can take more than 10 years for new drugs to run the gauntlet of clinical trials. Clark said that process should apply in most cases.
“But not when you’re talking about a fatal disease that moves very quickly," she said. "That is an exceptional situation, and it should have exceptional clinical trials.”
Only one medication, Riluzole, is approved for the treatment of ALS. But it only extends life expectancy by a couple of months.
About 5,600 Americans are diagnosed with ALS each year.
