https://www.massgeneral.org/doctors/16904/merit-cudkowicz

Merit is by far the best ALS doctor I have ever met. She runs multiple trials through MGH. I know it may be a burden but try to get an apt with her or at least watch her talks/interviews as she can provide amazing landscape of ongoing trials.

Stay strong. ALS is a daily grind. My pops is starting year 5 since his diagnosis and while things are definitely getting harder he is still with it.

Another thing to know is that if/when non invasive ventilation is needed talk with Jason:

https://www.pennmedicine.org/providers/profile/jason-ackrivo?fadf=pennmedicine

He’s a lung doctor but specializes in als and can help prevent the need for a trach