Read on Twitter
I appreciate the @alsassociation for providing their perspective. After reading this statement, it is clear that they, and likely others in our community, have no idea what an expanded access program is or does. It's time we change that. (1/5) https://twitter.com/alsassociation/status/1273288884231770113
The statement also exposes the fallacy of the argument that there will be a single treatment or cure and that all our focus must only be on that. ALS is heterogenous. Cures for all will start with cures for some that unlock breakthroughs. (2/5)
We are ready to start unlocking those breakthroughs--be they genomic, biomarker, or otherwise--now, and expanded access programs are a critical weapon to moving us forward. Otherwise, we are sacrificing the current ALS generation and I ain't down with that. (3/5)
I offer these thoughts--there are many others--because the path forward is not to demonize those who disagree with us. Instead, we need an open dialogue focused on how to shape HR 7071 to be able to pass and to make a real difference in the lives of ALS patients now. (4/5)
I, for one, welcome this public discussion as it will educate and empower all of us. My faith has always been in the power of the pALS and cALS--in this community--to bring about change. Let's have this discussion--on the ALS clock--and get therapies to those fighting today.(5/5)
