March 19, 2021

When I was diagnosed, I didn’t plan on starting a movement. Fighting for my life changed that. Your efforts to prompt Biogen to reconsider have been a source of awe and joy this week. Thank you seems inadequate for all you’ve done.

It is in this context that the email we just received from Biogen once again saying NO seems inexplicable. This time there was a reason: protecting the regulatory path for tofersen to get it to as many patients as possible as quickly as possible.

I have no argument with that goal. What I cannot understand is why Biogen will not avail themselves of many paths available to provide tofersen to patients who cannot wait -- those with rapid progression like me (AV5 variant). These alternate paths are sanctioned by the FDA so that they do not slow regulatory progress. 

As a world class innovator, Biogen is capable of finding a solution. We need to continue our efforts, so they try again – and this time succeed. Please share the petition http://chng.it/y8D5YGwN57 post a respectful, polite comment to Biogen’s March 15 Facebook post, email or call Biogen, ask your friends, families, colleagues to join the effort.

Thank you for continuing the fight to give me and other people with SOD1 ALS with the AV5 variant a fighting chance.

Lisa