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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”

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    • #22587
      DeAnn R

      On my quest for Spinraza the biggest barrier besides insurance red tape was my spinal fusion.  Where I go they use the Transforaminal approach to access my spine.  I know other methods exist, but this is working for me.  If you follow Squirmy & Grubs you’ll know Shane Burcaw is having to switch clinics.  He gets his injections in his neck.  The new clinic may not be able to do it that way. I’m sure they’ll get it sorted out, but I don’t know what I would do if I was denied after already having access to it.

      Were you denied treatment using Spinraza because of your spinal fusion or other medical conditions? If so, would you be willing to share what happened to you with our other members?

    • #22602
      Halsey Blocher

      My spinal fusion combined with the severe curvature of my spine ended up completely preventing me from receiving Spinraza. This is the column I wrote about it a while back for anyone that wants to give it a read. I wasn’t willing to try some of the riskier approaches like this neck method that Shane uses. I ended up deciding it would be best to wait and see what other treatments would become available. I’m very excited about the possibility of Risdiplam. I hope everything goes smoothly for Shane.

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