SAN ANTONIO – A drug in its early development stages is catching the attention of the ALS community.
ALS, also known as Lou Gehrig’s disease, is a progressive degeneration of nerve cells in the spinal cord and brain, eventually leading to paralysis and trouble breathing or swallowing. The disease has no cure.
Juan Reyes was diagnosed with ALS in 2015.
“I was in denial. Initially is extremely overwhelming,” he said. “It’s a double-edged sword because you’re glad they have an answer and a name for what is happening, but you’re also devastated because everyone with ALS passes away.”
To help cope with the diagnosis, he joined the incredibly strong and vocal ALS community in San Antonio that offers support and closely watches for advancements in research.
Excitement came with the recent announcement that the FDA was classifying a new drug out of Israel that has seen success in delaying the onset and progression of ALS.
The drug by Neuromagen Pharma Ltd., currently called AGS-499, received what’s called Orphan Drug Designation which is used for promising treatments of rare diseases.
The FDA designation provides financial and regulatory benefits as the team moves toward clinical trials.
“Treatment that might stave off ALS for your first generation is astounding,” Reyes said.
When Reyes read about AGS-499, he immediately thought of a specific group in the ALS community.
“They’re referred to as pre-symptomatic familial ALS members. What that means is that they carry the gene for ALS, but they have and developed ALS yet,” he explained.
“We have to be pragmatic and cautiously optimistic, but it doesn’t mean we can’t hope for a successful trial and eventually approval by the FDA,” Reyes continued.
Though research can move slowly, and ALS can move quickly, Reyes said he’ll never stop finding positivity in even the slightest glimmers of hope.
“All we really desire is to be around and with our families making memories,” he said.
That simple yet powerful desire shapes his perspective every day.
He encourages any ALS patients and family members to join the ALS Association and become part of the community.
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