First Adult SMA Patient in Arizona Treated With Spinraza

There have been quite a few stories about the amazing effects of Spinraza (nusinersen) on young children and babies with spinal muscular atrophy (SMA), but this video shows how older children and adults can also benefit from the new drug.

MORE: Right-to-try law helps babies with SMA gain access to Spinraza in Minnesota.

This segment from KGUN9 features Noah Spencer, one of the few adults in the country being treated with Spinraza. The 18-year-old from Tuscon, Arizona was diagnosed with SMA at 13 months old.

Spencer says he’s already starting to feel a difference since taking Spinraza. He now has more flexibility in his wrists and improved muscle strength in his arms. The young man is hopeful that after a few years of the treatment he may even be able to walk for the first time.

MORE: Adult with SMA shares his perspective on Spinraza.

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

 

7 comments

  1. jan berkhey says:

    hello, i,m very pleased with the drug spinraza, i have also a motorneuron desease, for 6 years. my age is 56. my left calf lost strength, my lower arms don,t feel so well. my neurologist says it,s very slowly progressive. my question; is the treatment availeble for me?

  2. Carla Z. Gillam says:

    All SMA patients should have the right to try medication. Not right to keep this med from people because of their age. My sister who is 43 has three young children that need her. This medication might not only improve her function but. Allow her to live until her children reach adulthood.

  3. Peggy Marsh says:

    My grandson Michael Kelley just turned 20. He was diagnosed with SMA type 2 before he turned 2 years old. We live in Alabama. When will the drug spinraza be offered to him? None of the doctors here do not know anything about this. I have prayed for a cure, something that will help improve his situation. He has been in a wheelchair since the age 3.

  4. Susan says:

    My Son is 17 and has SMA type II. I’m am so happy that a treatment has come out. However I’m not convinced it will help him enough. I would love to here feedback on the long term improvements from older SMA type II. I can only say this because he is very stable right now and we are not approved in Canada as yet. Not sure if we will go this route …everything I read seems to point to this drug being most beneficial for younger children.

    • Tim Bossie says:

      Hi Susan… we at SMANewsToday wish your son all the best. We are also looking forward to long term information about spinraza and its effect in older patients. We can only hope for the best.

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