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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 ago by Krystal.

  • Author
    Posts
    • #19719
      Rachel Markley
      Participant

      Hi all!

      My name is Rachel Markley, I am 28, a weak type II, and live in League City, TX between Houston and Galveston. I am a full-time research coordinator in the Center for Neuroregeneration at Houston Methodist Hospital. I will receive my 4th loading dose of Spinraza next Wednesday!

      Happy to answer questions or just chat!

    • #19720
      Tracy Odell
      Participant

      Welcome, Rachel! You should enjoy being part of the forums. I know I do!

      From what I have heard, the Spinraza injections make a difference.

      Tracy Odell from Toronto, Canada, SMA II and 60+

    • #19729
      Kevin Schaefer
      Keymaster

      Happy to have you here! And good luck on your next injection!

    • #19738
      Ryan Berhar
      Member

      Hey Rachel, welcome! I’m Ryan, one of the forum moderators. Let me know if you have any questions. Good luck with your fourth loading dose!

    • #19749
      Krystal
      Participant

      Hello Rachel,

      It’s nice to virtually meet you. My daughter is probably one of the few youngest members on this site. She is 19 months old with Type 2. I am honestly here to build relationships with the older SMA population so I can prepare my daughter for the future and learn more about SMA and how it affects daily living. We live in the Dallas suburbs, and I have family in Houston. Exciting to see that your last loading dose will be next week!

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