olga
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Dear All,
I have a brother with SMA 2 who can’t get Spinraza because of his spinal deformity (he had spinal surgery and our doctors can’t give him medicine because of it). We are looking for another way to stop this terrible disease. Please advise what should we do? Where can we go to get help? Has anyone had such a situation and how did you deal with it? I hope Ridisplam will be on our market as soon as possible because it is probably the last option to help my brother.
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Dear Alyssa Silva and Kelly Miller,
Thanks for the advice, I haven’t heard anything about albuterol syrup. This is good news that it can help! We will ask our doctor about this syrup. I hope that soon there will be a solution and that my brother and others will start treatment asap.
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We tried to create a port, but the operation to create it was too risky. We will continue to look for some other method. Thank you for your support, I hope you are right that oral treatment – Risdiplam, will be introduced soon.