Connect with others who understand.

sign up log in
About mySMAteam
Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Top 3 Search Results for "Spinraza"

reset

Can A 23 Year Old Take The At Home Drug For SMA?

Can A 23 Year Old Take The At Home Drug For SMA?

My son is almost 23 and an SMA Type 1. He has not wanted to do the spinraza but we are interested in the at home drug but not sure if people his age have taken it and what the outcomes have been. Any info would be much appreciated!

A mySMAteam Member said:

I am so sorry to hear you went through this! My son also had spinal fusion when he was 3, another reason he was so hesitant to try the Spinraza. We will look into the oral stuff more, was just… read more

posted about 1 month ago

SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.

SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.

Growing up, at what age did you understand or had been told you have not something wrong with you but that you have special muscles unlike the other kids? (Thats what we call connors condition, to help his older 8 yr old brother understand) connor is type 1 and is currently 7 months old. Recvd zolgemsa on halloween. Didnt finish our last loading dose of spinraza. If you currently do maintaince dosing of spinraza has it been successful for you? Pro? Cons? Effectiveness still? At what age did you… read more

A mySMAteam Member said:

Thank you so much for shared your story! I’m confused as to what I’m hearing about the Spinraza treatment...Isn’t that treatment extremely hard to get because of price? I don’t mean to pry but how did… read more

posted 9 months ago

Gene Therapy

Gene Therapy

I was wondering is there anyone here that knows someone who or have had zolgensma gene therapy?

A mySMAteam Member said:

I believe every child is different. The child that I know of that received zolgensma is also receiving another treatment (Risdiplam) as well. She was a type 1 who is now able to lift her leg over her… read more

posted 8 months ago