Pennsylvania man battling ALS receives 'promising' new treatment at Philly hospital

There’s a promising new drug for people living with amyotrophic lateral sclerosis (ALS). Recently approved by the FDA, Todd Legg participated in an experimental trial for the new drug at Penn Medicine.

"There’s a lot of people that have no hope, but we do. If we could get that to everybody," said Legg.

Legg, 50, lives in the Scranton area and travels to Philadelphia every month for the treatment called Qalsody, formerly known as tofersen.

The high school math teacher was diagnosed in August 2020 and entered the trial a few months later in October.

"Every 28 days we come down, as I say to my students, I get stabbed in the back," said Legg.

Legg has a rare form of ALS identified as SOD1-ALS. Legg said his mother and aunt died from the disease, and five family members in his generation have the gene mutation for SOD1.

"Battling not only for myself but battling for my family; and my sons haven’t been tested but odds are one of them will have it," said Legg.

"ALS is a neurodegenerative disorder of the motor neurons, so basically these are the motor neurons that connect brains to the muscle. If they degenerate, it’s very hard to move," said Dr. Colin Quinn of Penn Medicine. "Familial ALS makes up about 10 percent ALS overall. SOD1 makes just 20 percent of that. So, that’s actually just two percent of ALS overall, but because it’s a dominant disorder, it’ll run in families."

Dr. Quinn, a neuromuscular neurologist, has participated in 15 experimental trials and said it was exciting to see this experimental drug’s affects on his patients.

"I found the drug to be very promising. What we’re looking for is to slow the disease down or ideally stop the disease, and I think in this case we’ve had a really good effect on Todd‘s disease. I think time shows us the drug is working. We’ve had the advantage of treating Todd over two and a half years and he’s still teaching, still hunting, still doing work on his house," said Quinn.

Both Quinn and Legg are hopeful this is only the beginning of promising new treatments for ALS.