[Katie Liz]

I was diagnosed in January 2021, and officially first had symptoms in May of 2020.  So most trials would exclude me after two years from onset.  I get my ALS care at Stanford in Palo Alto, CA.  Right after diagnosis I was immediately enrolled in a trial for Rabuluzumab, but after about six months they stopped the trial because preliminary data showed it had no effect.  Then I did some research and found the Healey ALS Platform trial has a site at the Forbes-Norris Clinic in San Francisco.  I contacted them and long story short, I’m in Regime D (Pridopidine) of the Healy Trial there.  My husband and I have to drive four hours each way and there is very little in the way of travel reimbursement, so for many this would be a logistical and financial hardship.  Do I think its worth it?  I felt compelled to do something with such a serious diagnosis, and time was of the essence.  I am still progressing with both bulbar and limb symptoms, but maybe I’d be worse?  In any event I feel good about doing my part for science to find us, and those who are diagnosed in the future, some hope.

[Katie Liz]

I signed up for a phase 3 trial of a drug called Rabuluzumab.  I did it because I’m early in the disease process and I hope if I am getting the drug (and not the placebo) it helps slow the progression.  I don’t want to just do nothing so I’ll take any opportunity I can get.