New ALS drug could soon come to Capital Region

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Every 90 minutes, someone is diagnosed and someone passes away from ALS.

ALS, or amyotrophic lateral sclerosis, is a fatal neuro-degenerative disease. It affects nerve cells in the brain and spinal cord.

People with ALS lose their ability to walk, talk, eat and eventually breathe.

More than 5,000 people are diagnosed every year.

The average life expectancy is two to five years.

There have been movements to raise awareness. You probably remember the “Ice Bucket Challenge” in 2014. People from all over the world were dumping buckets of ice water on their heads, and committing to donate money. Many of us here NewsChannel 13 took part. That challenge helped raise about $115 million.

The money has helped fund a new ALS drug. It’s called Relyvrio.

It was just approved by the FDA, after a single, relatively small study, showed it slowed progression of this horrific disease.

The downside, could be the very high cost, which could be more than $100,000 per person each year. It’s still unclear what would be covered.

The St. Peter’s ALS Center took the first steps on Tuesday to finding out how to bring the drug here.

Meet some people who have ALS as they talk about how they’re living with it each day by watching the video of Subrina Dhammi’s story.

MORE: Walk to Strike Out ALS