I am unsure if my killjoy colleagues have clocked just how significant the FDA’s Tofersen ALS decision is for the future of neurodegenerative disease diagnosis and treatment.
I'm 60 and perhaps 10 years into PPMS, having also had Mononucleosis (Glandular Fever) at 19. I have a daughter of 27 and son of 19 who are showing no signs of MS, thankfully. Statistically they have approx. 2-4% probability of contracting MS themselves.
The question is, should I get them screened for RIS and where should I go for that?
All this sounds like exciting news and a more positive outlook for those with neuro degenerative disorders. Almost certainly too late for me but hope for my grandchildren.
“when you are symptomatic with Alzheimer’s or Parkinson’s, it is really too late to make much of a difference to the natural history of the disease”. The Michael J Fox foundation has funded $1 billion of research projects into Parkinson’s disease. No amount of research funding seems to make any real difference to the treatment of neurodegenerative diseases. My dad’s friend died of MND in 1985 (4 years after dx). His neighbour died of MND last year (4 years after dx). Nothing really changes.
Very disappointing that EBV was not discussed at the AAN meeting. How is a cure going to be found without discussing EBV? Just occurred to me why Prof G said testing on mice EAE models do not work as well as testing on pwMS. Cos they do not have EBV virus in them!
Approval of tofersen is three good news: treatment itself, new class of medicine becoming established treatment and NFL stuff.
Regarding RIS if payers won't pay, would it be feasible for neurologists to go for a course of rituximab off label? I would say that there is relevant chances that if a depleted therapy is given first line and timely could avoid future MS development or worsening
Very thought-provoking, Gavin.
I'm 60 and perhaps 10 years into PPMS, having also had Mononucleosis (Glandular Fever) at 19. I have a daughter of 27 and son of 19 who are showing no signs of MS, thankfully. Statistically they have approx. 2-4% probability of contracting MS themselves.
The question is, should I get them screened for RIS and where should I go for that?
All this sounds like exciting news and a more positive outlook for those with neuro degenerative disorders. Almost certainly too late for me but hope for my grandchildren.
“when you are symptomatic with Alzheimer’s or Parkinson’s, it is really too late to make much of a difference to the natural history of the disease”. The Michael J Fox foundation has funded $1 billion of research projects into Parkinson’s disease. No amount of research funding seems to make any real difference to the treatment of neurodegenerative diseases. My dad’s friend died of MND in 1985 (4 years after dx). His neighbour died of MND last year (4 years after dx). Nothing really changes.
Hi! Sorry for being off topic but im kind of desperate. I paid for subscription but im having problems with it. Who can i contact for help?
Very disappointing that EBV was not discussed at the AAN meeting. How is a cure going to be found without discussing EBV? Just occurred to me why Prof G said testing on mice EAE models do not work as well as testing on pwMS. Cos they do not have EBV virus in them!
Approval of tofersen is three good news: treatment itself, new class of medicine becoming established treatment and NFL stuff.
Regarding RIS if payers won't pay, would it be feasible for neurologists to go for a course of rituximab off label? I would say that there is relevant chances that if a depleted therapy is given first line and timely could avoid future MS development or worsening