more than half of people who start spinraza for sma stop within 2 years study finds and spinal muscular atrophy | mySMAteam

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Top 10 Search Results for "more than half of people who start spinraza for sma stop within 2 years study finds"

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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
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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

Anyone With Type 1 Sma Child Who Got Zolgensma?
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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

Are There Any Moms Who Had Been Diagnosed Before They Had Children?
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A mySMAteam Member

I have SMA3
I’m 36 and was diagnosed at age 5. I just had my first baby almost 5 months ago. It’s tough. So worth it but I’m struggling during the day with him due to lack of strength and covid… read more

Is Ridisplam Effective For SMA-LED1 Disease?
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What Is SMA-LED? Read Article...
Clinical Trials
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Can someone of this group tell me something about myostatin inhibitors for people with SMA?

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What Gene Causes SMA?
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Scoliosis
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Does scoliosis cause death

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A mySMAteam Member

So...I don't want to paint an overly rosy picture. The healing after my surgery took months. It wasn't a pleasant experience, the healing was very painful and I had complications that led to a… read more

Treatment Kab Aayega Sma Type 3 Ka
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