[Teresa]

I’ve been on it since 8/2019. Diagnosed 3/2018. I definitely know it’s helping me. I’ve been hold my own with slow progression. I started with the trial and then the Tofersen. I know I got the real medicine in the trial, because I could actually feel when I needed the next dose. The open label enrollment is ending in July and I’m really praying I can still get it.

[Teresa]

Hi Amanda I’ve been getting Tofersen since 8/2019. I started in the trial and am positive I got the real stuff, because I could actually feel the difference right away! Yes I’ve progressed but it’s been extremely slow. I wonder if the dose was increased if it would help with that? Anyway it’s a Godsend for all of us with SOD1! By the way my brother also has it. He isn’t on Tofersen yet. I hope it’s soon though!