FORT SMITH, Ark.(KNWA/KFTA) — A patient is losing hope after the FDA denied a new potential ALS treatment.
Mark Bedwell, a Fort Smith native has been battling amyotrophic lateral sclerosis disease also known as ALS for seven years.
“People couldn’t understand what I was saying and I couldn’t raise my arms above my head,” Bedwell said.
Bedwell says after hearing the most devasting news of his life, he immediately searched for a cure.
“After all the crying and whining and depression I’ve gone to the internet to see how I am going to get cured from ALS and everything kept going back to a trial called Nurown,” Bedwell said.
Bedwell says he received treatment in Boston from a company called Brainstorm Cell Therapeutics.
The company developed an ALS treatment known as Nurown stem cell therapy which takes the bone marrow out of the patient’s body, treats it, and put it back into the spinal fluid.
“An injection every two months, but they still haven’t told me if I was receiving the real drug or the placebo,” Bedwell said.
Last year, The FDA said only 33% of people given Nurown met the proposed benefit of the treatment. Which was just 5% better than the placebo group.
However, Bedwell says he is living proof that this treatment worked because people diagnosed with ALS have a lifespan of two to five years
“To this day, two and half years later, I’m still walking, talking, and being completely independent,” Bedwell said.
This month the FDA officially sent Brainstorm Cell Therapeutics a refusal-to-file letter saying it won’t review the company’s application for Nurown, but for people like Bedwell, all he asked for is a fighting chance.
“Makes me want to fight a lot harder. My main goal in life was to get better, go back to work and just live my life. Now my goal is to help,” Bedwell said.
Bedwell says he will continue to advocate for the ALS community, because if nobody else keeps fighting for them, then who will?