5 ms·

We have had hopes for HD treatments dashed many times before. It’s hard to not be cynical, but this one seems like it could be the real thing. Godspeed to ever

We have had hopes for HD treatments dashed many times before. It’s hard to not be cynical, but this one seems like it could be the real thing. Godspeed to everybody working on this...with an emphasis on the “speed” part.

andygates 9y ago
Speed is tricky for the next phase, which is to see if it (1) actually affects progress of the disease and (2) is well tolerated long-term. But may it all go smoothly! ISTR there are statistical techniques which can help, but even so, we're on for a 2-year trial in all likelihood. My neurologist was literally dancing in his chair. :) It'll be interesting to see if the technique extends to other single-cause conditions.
WillReplyfFood 9y ago
Imagine having huntingtons, a death sentence hanging over your life, over your family and then suddenly- its cured, the door swings open, and a life you never expected to have lies ahead. Go team humanity!
- faltad 9y ago
  It's not exactly cured: "Could slow progress". But of course there is a huge difference between having chances to die 10 years after onset of disease and 30 years! Especially since it appears to start in later life
  - smudgymcscmudge 9y ago
    My family tends to live 25-30 years after onset of symptoms because we have fewer CAG repeats than most HD families. So this may be effectively the same as a cure for us. The don’t want to dismiss the difference though.
- paulcole 9y ago
  To an extent this has happened with Cystic Fibrosis and HIV+ patients. Many have trouble dealing with a future they hadn't prepared for and thought wasn't going to happen. Living longer is not automatically some magical gift.
  - deleted 9y ago
    [deleted]
  - dhimes 9y ago
    I like to think that we're in a golden era where most of these hideous diseases are eradicated or at least made manageable in the next 25 years, with the problem virtually solved in 100 years. Too late for me, but what a world it will be then!
myko 9y ago
I'm so hopeful for this, yay progress!

andygates 9y ago

Speed is tricky for the next phase, which is to see if it (1) actually affects progress of the disease and (2) is well tolerated long-term. But may it all go smoothly! ISTR there are statistical techniques which can help, but even so, we're on for a 2-year trial in all likelihood. My neurologist was literally dancing in his chair. :) It'll be interesting to see if the technique extends to other single-cause conditions.

WillReplyfFood 9y ago

Imagine having huntingtons, a death sentence hanging over your life, over your family and then suddenly- its cured, the door swings open, and a life you never expected to have lies ahead. Go team humanity!

faltad 9y ago
It's not exactly cured: "Could slow progress". But of course there is a huge difference between having chances to die 10 years after onset of disease and 30 years! Especially since it appears to start in later life
- smudgymcscmudge 9y ago
  My family tends to live 25-30 years after onset of symptoms because we have fewer CAG repeats than most HD families. So this may be effectively the same as a cure for us. The don’t want to dismiss the difference though.
paulcole 9y ago
To an extent this has happened with Cystic Fibrosis and HIV+ patients. Many have trouble dealing with a future they hadn't prepared for and thought wasn't going to happen. Living longer is not automatically some magical gift.
- deleted 9y ago
  [deleted]
- dhimes 9y ago
  I like to think that we're in a golden era where most of these hideous diseases are eradicated or at least made manageable in the next 25 years, with the problem virtually solved in 100 years. Too late for me, but what a world it will be then!

myko 9y ago

I'm so hopeful for this, yay progress!