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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 6 replies, 5 voices, and was last updated 1 year, 2 months ago by Kevin Schaefer.

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    • #18889
      Anonymous
      Inactive

      Hi all,

       

      My name is Ismail (Izzy) and I’m a 37 year old guy from Australia born with SMA Type 1. I do my best not to let my disability limit me and I try to live as normal a life as possible. My hobbies and interests include all sorts of things. Some of these are technology and computers, gaming, medical research, sci-fi movies & tv series, going out when the weather is nice and activism for causes that I believe in.

       

      Please feel free to ask ask me any questions and to add me as a friend.

    • #18891
      Kevin Schaefer
      Keymaster

      Welcome Izzy! Thanks for joining us.

      I’m a big sci-fi enthusiast as well. Any favorite movies? Mine include “Starman,” “Minority Report,” and “Blade Runner 2049.”

      Glad to have you here. I think you’ll find the forums community here to be really supportive.

    • #18894
      Kelly Miller
      Participant

      Hi Izzy, nice to meet you. I dabble in sci-fi but not nearly at the fan on level of y’all probably. It’s really my husband who loves everything science-fiction. I’ve read a lot, but my thing is more fantasy than sci-fi.

      So, you must be doing something great healthwise to be an older person with type I. And, by older, I mean more than 18. What’s your secret?

      • #18910
        Anonymous
        Inactive

        Thanks for all your warm welcomes everyone. I’ll do my best to answer all your questions one by one.

        I love all sci-fi but my main love would have to be old school sci-fi. I’m a child of the 80s and because of this I would choose The Original Star Wars Trilogy as my ultimate favorite. I would also list Terminator 1 & 2 & The Alien Movies. Wargames is another one that comes to mind as well as Matrix. Just to name a few of my favorites.

        In terms of my survival, I firmly believe that my faith in Allah is a huge factor. Also, my mother has given her entire life to ensure that I live as normal and happy a life as possible. She is always supportive of everything that I would like to do and experience. She is also very proactive in regards to my care and survival. I also have a great support network when it comes to therapists and doctors.

        When it comes to activism, I’ve been to quite a few protests in support of the various muslim nations which are being oppressed by various regimes. These include The Arab – Israeli Conflict and The Assad Regime in Syria.

        When it comes to gaming, I have a YouTube video of my gaming setup however the video is a few years old and my setup has changed a little bit. You can check it out here: https://youtu.be/U_5JtvCQrig

        • #18914
          Kevin Schaefer
          Keymaster

          Thanks for sharing Izzy. Yeah I’m a huge Star Wars buff as well (if you couldn’t already tell from my profile pic). It’s also really cool to hear about your advocacy work.

          Looking forward to getting to know you here!

    • #18895
      Tracy Odell
      Participant

      Hello Izzy,

      I would like to learn more about the causes that you are involved with. Are they disability related advocacy or based on other interests?

      I am in Canada and am active with a provincial organization working to advance the rights of people with all sorts of disabilities http://www.cwdo.org.

    • #18903
      Ryan Berhar
      Member

      Hey Izzy, welcome! I’m curious about how you game. I have pretty much lost the ability at this point, but I really miss it.

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