Latest News & Press Releases

Richmond Times-Dispatch: A Dream Comes True for Andrew and His Buddies

slays-1997.jpg

The Slays in 1997
(image credit: Richmond Times-Dispatch)

Thanks to the Richmond Times-Dispatch and columnist Bill Lohmann for the wonderful article published today about FightSMA's Joe and Martha Slay, and their role in searching for a cure for Spinal Muscular Atrophy.  The story centered around the recent approval by the FDA of Spinraza, the first drug to be sold in the United States to treat SMA.  A portion of the article is below, but you can read the rest by clicking here.

This is not the top of the mountain, but it is a lovely scenic overlook. The drug, Nusinersen, which will be sold by Biogen under the brand name Spinraza, is incredibly expensive — hundreds of thousands of dollars to cover the cost of multiple treatments per year.

But based on clinical trials when injected into the fluid surrounding the spinal cord, the drug has the potential of increasing strength in some patients and halting the progression of the disease in others.

Finally, families who have been longing desperately for a breakthrough have this drug to give them hope.

“There are discussions going on now with insurance companies,” Slay said. “I think there are good intentions all around, but it’ll take smart, good people to figure it out so that this can be brought to as many families as possible.

“There are issues to sort through, but it’s very exciting. It’s quite a moment.”

The FDA approval wasn’t a total surprise to the Slays, who have been aware of the clinical trials and knew federal approval was likely — though perhaps not this quickly, as it turned out the FDA had fast-tracked the process.

The Slays also were familiar with the drug itself since, in a way, they were there at the beginning.