GRAND RAPIDS, Mich. (WOOD) — During ALS awareness month, the ALS Association wants to spread the word that advancements are being made against this devastating disease.
In April, the FDA approved a drug called tofersen to treat ALS, which stands for Amyotrophic Lateral Sclerosis.
“It was approved very quickly by the FDA thanks to the hard work of ALS advocates all across the country,” said Merritt Spear, a Territory Executive with the ALS Association.
She said it’s the first time the FDA has used its Accelerated Approval program for ALS.
“Which means, they have the choice to approve something very quickly, so it gets in the hands of people living with ALS. So, they really cut a lot of the red tape and got this in the hands of people who need it as quickly as possible,” said Spear.
Tofersen targets a familial gene called SOD1, which is found in approximately 10% to 20% of people living with ALS, according to Spear.
“Tests are being done right now to see if this drug can actually be taken if you are identified as a person with that gene — can you take it to prevent getting ALS later in life?” she said.
The drug trial was made possible through money raised by events like Walk to Defeat ALS or even trends like the Ice Bucket Challenge from nearly a decade ago.
“It is through these donations that drugs and progress and treatments for ALS are made possible,” said Spear.
There are three ALS walks in Michigan coming up in the next few months. The Grand Rapids Walk to Defeat ALS is happening Sept. 10 at Sixth Street Park. There is also one in Detroit on Sept. 30 and one in Kalamazoo Oct. 14.