LAFAYETTE, Ind. (WLFI) — A Lafayette man living with spinal muscular atrophy is finally finding relief with a recently approved FDA drug.
Jim Willison was diagnosed with SMA officially in 1996. The 61-year-old voice actor is currently a part of a clinical trial for Evrysdi.
Evrysdi became FDA approved at the beginning of August.
Willison said he has lived with the progressive neuromuscular disease since the mid 1970's.
He has type 3 SMA, which is the least debilitating of all types, but has left him in a wheelchair since 2016.
People diagnosed with SMA cannot make the survival motor neuron protein.
However thanks to the first and only at-home treatment, Willison said he can maintain some sort of normalcy during the COVID-19 pandemic.
"No it’s not a cure and it is not going to make me better," said Willison. "I am not going to be able to get out of this chair because of this drug, but if I can stay the same that is exciting. There are still so many daily things I can still do and if I don't get worse to me that is amazing.
Willison said he wants to send a message of empowerment to all those living with spinal muscular atrophy.
He added if there were a cure he would 100 percent take it, but the newly found treatment has given him hope.
"Is there pain?" asked Willison. "No. It is just a very slow progressive disease you have to look back and say that you used to be able to do that, but now I can't."
Since 2018, infants born in Indiana must be tested for SMA as part of their newborn screening.