Thank you Dr. Bedlack and to your whole team for your work!! It does indeed bring hope and courage being part of the pALS community with all the information and support and opportunities to contribute. Your leadership is precious.
My heart already always went out to ALS sufferers, & then my brother aged 80 got late onset MND - ALS Bulbar. The anguish of watching him rapidly decline, a shell of himself, swallow & speech impairment, etc. a truly horrific scenario. What puzzles me is surely such late onset is rare? It’s the most vicious & cruel disease out there and as a family we are stunned & heartbroken for our dear family member. No treatment of any significance, terminal. WHAT ‘S BIG PHARMA DOING? Not much in terms of trials. Not a great money spinner for them. Shame on you.