Today I did something I never thought I would do again: slowly, haltingly and with my wife, @sabrevaya, watching me like a hawk, I walked in a pool again...on my own.
Not today ALS. Not today.
Update: we’ve been in the House of Representatives since 10:45 am. Don’t worry, we ain’t leaving ‘till we get the chance to testify and share the ALS story with the world. #ItsTime
None of us knows what tomorrow will bring, but I know this: we will fight, we will make a difference and we will end ALS, together. #IAMALS
https://t.co/DKTC9GViFL
To make clear that “we are confronted primarily with a moral issue. The heart of the question is whether we are going to treat our fellow Americans as we want to be treated." #ItsTime#NoMoreDead /End
My 5 year old’s friend asked her recently why her dad didn’t pick her up from school. She explained that I have ALS and it would take me forever to get there.
So today I surprised her and picked her up from school. Her reaction was e.v.e.r.y.t.h.i.n.g. (sound on).
Two years ago, I remember taking off my bipap and my lungs didn't expand themselves. I should've died the Spring of 2019, but here I am 2 years later on life support... Ready to kick a$$ #ALS#ACT4ALS
@Cylebo The ALS community is anxiously waiting 🙏🏻
Please consider talking to Health Canada or the EU if the @US_FDA is making you do another trial 💜 #NurOwn needs to be approved somewhere so #pALS can finally gain access 💜
@Cylebo Please $BCLI filing a MA @EMA_News after @AmylyxPharma indicated that appear to be open to greenlight a Phase 2 dataset. Real-world Data generated after EU approval could later support FDA BLA processes @ralph_kern@Cylebo