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The importance of newborn screening for SMA

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.


This topic has 5 replies, 4 voices, and was last updated 1 month, 4 weeks ago by Michael Morale.

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    • #24361
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you all had a safe and relaxing weekend.

      Check out Michael’s latest video here. If you’ve followed his videos lately, you’ll know that he’s switching from Spinraza to risdiplam. He talks more about his decision here, and how his last injection went. Hope you all enjoy!

      Do you have any questions for Michael? Are any of you switching to risdiplam?

    • #24365
      Alyssa Silva
      Keymaster

      Such an exciting time. Any nerves about starting this new treatment? I have terrible GI issues so a part of me is hesitant. Things could change, but I think I plan on observing others’ progress before jumping in myself.

    • #24371
      Teri Taylor
      Participant

      We are changing my grandson Charleston from Spinraza to Risdiplam. While Spinraza has helped him, it’s also given him seizures. We are hoping the seizures at least diminish with Risdiplam.

    • #24372
      Alyssa Silva
      Keymaster

      How scary Teri! Since risdiplam is entering a different system of the body, perhaps it will help.

    • #24375
      Teri Taylor
      Participant

      Alyssa, it’s very scary. His seizures are very, very serious (i.e., helicopter rides to hospitals)…..but he’s pulled through so far. He’s a super weak Type 1 but has a very strong will to live!!!!!! Most kids around his age (type 1’s) are getting seizures, but the company refuses to list it as a side affect.

    • #24378
      Michael Morale
      Keymaster

      Teri – I’ve never really heard of children suffering from seizures with regards to their Spinraza injections, but if your son didn’t have seizures before starting Spinraza, there may be a correlation.

      I agree with Alyssa when she said that risdiplam will be going to a different part of the body. Since risdiplam is going to be an oral treatment, that can also be administered through a G-tube, you might see a difference, but I would definitely talk to your son’s pediatric neurologist. I’m hoping that we hear something in the next few weeks with regards to the FDA decision regarding the approval of risdiplam.

      Please keep us updated, and let us know if we can help in anyway.

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