There’s no cure for ALS, the disease former 49ers wide receiver Dwight Clark recently revealed he’s battling. There’s no way to even diagnose it.
That’s done by eliminating maladies with similar symptoms – Lyme disease and B12 deficiency, for example – until it’s clear amyotrophic lateral sclerosis is the underlying cause.
But there are reasons for hope. Awareness and funding are at all-time highs thanks in part to scientific breakthroughs and to interest generated by the ice-bucket challenge of 2014 and by former New Orleans Saints safety Steve Gleason, a tireless champion for ALS research.
Gleason, 40, already was the Saints’ version of Clark in that he was central to that franchise’s most iconic play, a blocked punt in the first quarter of a game in 2006, the Saints’ first in the New Orleans Superdome since Hurricane Katrina devastated the city.
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In 2011, Gleason revealed he was battling ALS. Two years later, his Team Gleason organization held a summit of scientists, patients and caregivers in New Orleans that resulted in Answer ALS, a collaboration of 24 institutions dedicated to ALS research.
One of them is the Gladstone Institutes in San Francisco.
Steven Finkbeiner, a director at Gladstone and a professor of neurology and physiology at University of California, San Francisco, said the magnitude of the initiative alone – 1,000 patients will be enrolled – is reason for optimism in that it will result in the most comprehensive ALS data ever collected.
ALS is neuro-muscular disease that gradually weakens the muscles needed to move, speak, eat and breathe. Finkbeiner said the goal is to identify the signatures of ALS and to figure out how to reverse them. His work includes the use of artificial intelligence and robotic microscopy, which allows his laboratory to process large amounts of data around the clock and to scan for patterns that may be too complex for the human eye.
“We hope that by studying this we’ll find the molecular signature of ALS that has so far eluded investigators,” Finkbeiner said.
The ice-bucket challenge – in which participants dumped water on their heads in the name of ALS research and challenged others to do the same – also brought an infusion of interest and funds. Over a six-week span in summer 2014, the ALS Association received $115 million, money the group says went toward research that has identified four genes linked to ALS.
“That’s a big deal because it provides a target for researchers to start going after,” said the ALS Association’s Calaneet Balas.
She noted there currently are several drugs designed to treat ALS symptoms and to improve quality of life that are in the trial phase. The ice-bucket challenge isn’t solely responsible for those advancements, but it helped.
“It’s amazing to me and it’s very clear: If you fund research, you come up with answers,” Balas said. “That’s the deal. And we’re starting to see that.”
It’s too early to say whether Clark’s revelation will cause a spike in ALS-related donations. The former 49ers receiver is one of the most beloved sports figures in the Bay Area and his toe-tapping touchdown in January 1982 – known as “The Catch” – is one of the NFL’s most well-known plays.
Because of that Balas said she expects to see an influx by the end of the week.
“We often do see a bit of a bump when there’s interest in people,” she said.
Facts about ALS
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, is a fatal, neurodegenerative illness that affects nerve cells in the brain and the spinal cord. A closer look:
- The average life expectancy of a person diagnosed with ALS is two-to-five years.
- As the disease progresses, people with ALS lose the ability to walk, move, speak, swallow and –eventually – to breathe. However, the person’s mind and senses continue to function.
- Every 90 minutes, someone is diagnosed with ALS. Every 90 minutes, someone loses their battle.
- ALS is not contagious and does not discriminate – it affects men and women of all ages, ethnic backgrounds, and socioeconomic communities around the world.
- Approximately 10 percent of those diagnosed have a hereditary or familial form of the disease.
- Military veterans are diagnosed with ALS nearly twice as often as the general population.
- Most people with ALS remain at home throughout the course of the disease. The progression of the disease is often emotionally, physically and financially draining on families.
- The annual costs for home care, coupled with the cost of necessary equipment (which includes speech, mobility, transportation, etc.) can exceed $200,000 per year.
- Currently, there is no known cause and no known cure.
Source: ALS Association, Golden West Chapter