SAINT PAUL, Minn. -- More than 700 people participated in the ALS SuperHero Dash at Phalen Park Saturday, and this year the masked and caped runners had a medical breakthrough to celebrate.
On Friday the ALS Association announced the FDA has approved a new drug, Radicava, for the treatment of ALS. The drug has been demonstrated to slow the decline of physical function in ALS patients by 33 percent, according to MT Pharma which submitted the drug for approval. It's the second drug ever approved by the FDA for the treatment of ALS. The first, riluzole, was approved in 1995.
"It's extremely encouraging--it's exciting," said Samantha Lee, 19, whose father is confined to a wheelchair, unable to speak, after being diagnosed with ALS in 2015. "Dad has said from the beginning of this, 'I know I'm going to die of this, but I want to be the last person in my family to die of this.'"
Lee says her grandmother and great uncle died of ALS. Lee was surrounded by 200 family members and friends Saturday who participated in the 5K in support of her father, Jack Lee. The group wore blue capes with the logo: "Jack's Pals." Friends and family of Jack Lee raised more than $72,000 for the fight against ALS, according to the ALS Association.
In total the 2017 ALS SuperHero Dash raised $120,000 for the fight against ALS.
ALS, short for amyotrophic lateral sclerosis, is a neurodegenerative disease. Cells in the body that control movement die off, causing the victim to lose function in the body. Patients have about three to five years to live after the first symptom of weakness starts, according to Dr Ezgi Tiryaki, a neurologist at the University of Minnesota.
Tiryaki says this latest medical breakthrough will lead to others.
"As we discover more and more targets for this disease and more and more treatments, I think it will benefit the ALS population at large," said Tiryaki.
Tiryaki says Radicava will likely be available to patients by August this year. The drug, given through IV, will cost about $1,000 per infusion, according to Tiryaki.