I could not sleep last night. I wrestled with the importance of not only bearing witness to a wrong but the importance of having the strength to speak out about it at regardless of personal cost.

I began my ALS journey a devoted believer in collaboration. Still am. But.../1

...after 4 years in this fight I have some questions to that we constantly sweep under and that, in my view, are holding us back until we grapple with them.

So here goes in no particular order: /2

Why when drug trials “fail” is there no uproar for approval from clinicians who saw patients benefiting, or at least a targeted phase 4 trial or expanded access program, but complete abandonment of years of work?

How do so many smart people not understand expanded access? /3

Why do our stories and our words not resonate with those outside of the community?

Why is do no harm an acceptable mantra from doctors and regulators in a 100% fatal disease?

Why is the total investment in ALS research per year still less than the cost of 2 F-35 planes? /4

Why do we as patients still not see that the key to changing ALS is both acting up and inspiring others outside the fight to join us?

Why are the most visible leaders in this fight all patients?

I realize these questions will anger some but it is time to take them on. /5

We fight for our lives. If we want to succeed we have to be honest with each other. So with that, lay your honesty on me as I have a lot to learn, always. /end