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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 4 replies, 5 voices, and was last updated 1 year, 6 months ago by Krystal.

  • Author
    Posts
    • #16471
      Todd
      Participant

      Hi, my name is Todd, I am the father of an 18 month little boy whom has SMA II.  I am blessed to be his caregiver, and everyday brings some type of new joy to my life.  I truly am a better person by having the privilege to care for Aleksander, my son.  We live outside the Pensacola Florida area.  Thank you

      • This topic was modified 1 year, 7 months ago by Todd.
    • #16474
      Ryan Berhar
      Keymaster

      Great to hear from you, Todd! I’m Ryan, one of the forum moderators. If you have any questions, please let me or one of the other moderators know.

    • #16489
      Kelly Miller
      Participant

      Hi there Todd! So happy to have you added to our forum. My name is Kelly, and I am another member of this great place to get to know people. Please feel free to join in on any of the discussions we have here. Hopefully, you will feel encouragement & strength from our experiences. A lot of us have SMA II (myself included) & can give you our own insights into what your child may be going thru, as well as comfort for you as you try to navigate this sometimes confusing world of SMA.

      Looking forward to getting to know you better!

    • #16490
      Kevin Schaefer
      Keymaster

      Thanks for introducing yourself Todd! Great to have you here. I’m 25 with Type 2, and I live in Cary, North Carolina. If you ever have any questions about growing up with SMA or anything else, feel free to ask.

      Also, are you planning on going to the Cure SMA conference this summer? I’ll be there, and I try to go every year.

    • #16518
      Krystal
      Participant

      Hello, Todd. I’m sure I’ll have many questions for you regarding my daughter’s growth with SMA, as she is just a bit younger than your son and she also has Type 2. Welcome!

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