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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.’”


This topic has 3 replies, 4 voices, and was last updated 1 year, 3 months ago by Ryan Berhar.

  • Author
    • #18646

      new here, finally, after 20 years of searching they found a name for the thing I suffer from. I got the diagnosis very recently, they tested me for quite a few diseases but finally a neurologist looked at it from a different perspective and took an emg test. Now I can start to get  accepting the diagnosis. Reading in the forum will very likely be of help to me.

    • #18649
      DeAnn R

      Welcome! Nice to have you here. Although SMA isn’t a diagnosis anyone wants, I bet it’s a bit of relief to have some answers. I think you’ll find this to be a great community to learn from and share with. If you ever have questions please don’t hesitate to ask.

    • #18652
      Kevin Schaefer

      Welcome! I’m Kevin Schaefer, one of the forum moderators, and I have SMA Type 2.

      Like DeAnn said, diagnosis is never easy, and you’re probably overwhelmed right now. But this is a very supportive online community, and we’re happy to help anyway we can. Thanks for joining us!

    • #18674
      Ryan Berhar

      Welcome aboard!

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