Spinraza and spinal muscular atrophy | mySMAteam

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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"

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Which Is Better For Treating Sma Disease, Is Evrysdi Or Spinraza?
A mySMAteam Member asked a question 💭

Which is better for treating sma disease, is Evrysdi or Spinraza?

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SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.
A mySMAteam Member asked a question 💭

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

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A mySMAteam Member

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

Gene Therapy
A mySMAteam Member asked a question 💭

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

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A mySMAteam Member

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