A thread on #NurOwn:
I have seen first hand a number of friends receive NurOwn in the EAP and through RTT.
Seen it slow or stop their progression.
As an ALS patient this makes me scream for access for all of us who are dying due to rampant systemic paternalism. /1
His final full season Lou Gehrig hit .295 with 29 home runs. With #ALS. Today, on #LouGehrigDay across @MLB, 2 years after my diagnosis and 1 year after I was supposed to die, I picked up a wood bat with my one useful hand. I am proof. Science is gaining on this disease. 1/4
Those struggling with ALS need us to be their advocates.
That's why I'll be reintroducing my Promising Pathway Act, a legislative solution to give those struggling with life-threatening illnesses like ALS a fighting chance to receive access to timely, meaningful treatments.
Chris was give 6-18 months to live 22 months ago. Today he went skiing. Sometimes I don’t know how much our kids “get” all of this. Other times, like today when they cheered watching this video, I know we all understand how lucky we are. ♥️
I am constantly aware of what I have lost. Today, 4 years after I last skied, and nearly 2 years since my #ALS diagnosis, I was reminded of what I still have. Cohen described exactly how I felt: “Dad looks like himself.”