Zolgensma 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 7 Search Results for "Zolgensma"

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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

Can Adult Be Treated With Zolgensma?
A mySMAteam Member asked a question 💭
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Anyone With Type 1 Sma Child Who Got Zolgensma?
A mySMAteam Member asked a question 💭
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A mySMAteam Member

Yes, at 8 months old. His legs started moving in 2 days. He can now swallow, stand independently, walk short distances, and started riding a bike with training wheels. My general answer is to reply… read more

Zolgensma For Adults
A mySMAteam Member asked a question 💭

There was an article last November saying Zolgensma could be helpful for adults. Will they be doing a clinical trial on that soon? I have not seen anything further on it.

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A mySMAteam Member

Wow, this is the first I've read of this. Can anybody confirm?

Any Parents Of Kids Who Have Received The Zoolgensma Treatment?
A mySMAteam Member asked a question 💭
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Is There Any One With Type 1 And Get Zolgensma.
A mySMAteam Member asked a question 💭
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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