FORT LAUDERDALE, Fla. – It’s estimated 5,000 people in the United States are diagnosed with amyotrophic lateral sclerosis, or ALS, averaging about 15 cases per day.
While there currently is no cure for this progressively fatal disease, there is hope through several research efforts underway across the country and here in South Florida.
Several times a year, Juan Onaindia travels from Orlando to Holy Cross Health in Fort Lauderdale, Fla. to participate in one of four ALS clinical trials underway at the Phil Smith Neuroscience Institute.
Onaindia was diagnosed with the condition in July of 2021.
“I started having symptoms a few years back on my left shoulder where I started losing functionality and I started losing strength,” he said.
Dr. Gustavo Alameda said ALS, which is also known as Lou Gehrig’s disease, is a condition where the nerves in the brain and spinal cord start to degenerate.
“It may start as something innocuous where you might notice you’re tripping that slowly evolves over weeks and months and eventually can’t move your foot and eventually the rest of the leg might be involved and then it just spreads,” Alameda said.
Researchers are working to determine possible causes of the disease, and studying several medications to slow its progression.
“One of those looks very promising and there are some expanded access to these trials,” Alameda said.
Onaindia has completed the first six months of the blind phase of the Healy Platform trial and is now moving to the open label program, which means he’s actually getting the medication being studied.
“I’m hoping we find a treatment that will expand my life or even stop the progression of the disease. There’s a lot of new treatments coming up and hopefully we can find a solution,” he said.
The Phil Smith Neuroscience Institute recently received a 25-thousand dollar grant to support their research efforts.