• Posted by alyssa-silva on April 10, 2023 at 11:09 am

    Happy belated Easter and Passover to those who celebrate! It’s time to introduce our new March members.

    @ellierobertson

    @zeberifo

    @cathfr69

    @stef

    @mattattack

    It’s so fun getting to know our new members, so we figured we’ll make this a monthly tradition. We’d love for you to introduce yourself! Here are some prompts to get you started, but feel free to tell us what you’re most comfortable sharing.

    Where in the world are you from?

    Do you have SMA or know someone who does?

    Are you on any treatments?

    What hobbies do you have?

    Do you have music preferences?

    If you could shout something from the rooftop, what would it be?

    We look forward to getting to know you!

    alyssa-silva replied 9 months ago 4 Members · 11 Replies
  • 11 Replies
  • matthew

    Member
    April 10, 2023 at 11:54 am

    My name is Matthew, I’m from Texas and I have SMA Type 2. I currently am doing the oral dose Evrysdi but I dont notice it doing anything….my hobbies are videos. games  and isolating myself in my room in between manic episodes. I love heavy metal and jazz classical rap music basically everything but country music. As far as shouting something from the rooftop I don’t see the need to be up there let alone shout something? If I did shout something it probably wouldn’t be anything appropriate. I also have Borderline personality disorder and I’m not a reliable person!

    • deann-r

      Member
      April 10, 2023 at 9:29 pm

      No country music? You’re breaking my heart, my achy breaky heart, lol. Seriously though it’s great to have you with us, manic episodes and all. We have quite a few gamers in the group, so maybe we can get a discussion going about that. What do you play?

      • matthew

        Member
        April 11, 2023 at 9:09 am

        I play league of legends, hearthstone etc.. I play a lot of video games lol

  • alyssa-silva

    Member
    April 11, 2023 at 9:21 pm

    Great to have you here Matthew! Gotta admit I’m a country fan too. I get it though. It’s not for everyone. Thanks for introducing yourself. 🙂

  • steff

    Member
    July 4, 2023 at 6:25 pm

    Hey 👋

    My name is Stefanie and I am in Toronto Canada. I am probably a bit older than most in this group, but then I have lots of life experiences to share. I have Type 2/3 SMA, I always hate this question because apparently because I started to walk as a toddler they count me as 3 but my progression is more like a 2 (I think). Either way I am not eligible for any treatments since I am 52 and well Canada doesn’t pay for anyone in my age range but they will gladly give it at market price 😆

    I am married and we have no children. I am easy going, love music and movies. I used to enjoy painting but my arms are way to weak so still need to find a creative outlet. My husband bought me a Mickey Mouse Lego set which is flat and it becomes a hanging piece. Working on that slowly. Yes, with no kids one can get to do kid like stuff.

    Looking forward to being here.

    • deann-r

      Member
      July 5, 2023 at 5:24 pm

      Nice to meet you! My niece might be going to school in Toronto this fall. If she can get her ducks in a row by then. Yes, type can be tricky, especially with treatments and newborn screening. I go with strong type 2. You’ve got a few years on me but at 43 I feel like an old timer in the SMA world. What types of movies/music are you into? I’m always looking for something good to watch or new to listen to. Have you ever tried diamond painting? I can envision my hand sticking to the board so haven’t tried it, but I love being creative too 😀

      • steff

        Member
        July 11, 2023 at 3:45 pm

        yeah, that’s one thing we must be doing something right I figure if we’re getting older lol

        I honestly don’t know what diamond painting is, but I think I should look it up because it sounds fun and I love things that sparkle ! and music wise I’m all over the place, but my true favourites are Beyoncé and Taylor Swift. So that Taylor add some dates in Canada but she must not play this up here. I didn’t go to the Renaissance tour for Beyoncé but I did see her in concert previously. what about you? Are you into specific music artist?

      • deann-r

        Member
        July 12, 2023 at 9:04 am

        Ooh if you love sparkle definitely check it out. I think it’s called diamond painting. I’ve seen people create big elaborate pieces, but the small scale ones are more enticing to me. At least for my ability (or lack thereof.) If you do try it let us know if it’s easy enough.

        As far as music I’m pretty boring. I have seen Maroon 5 and Bruno Mars in concert. Both put on good shows. Neither have anything new out that I know of. Lately I have a lot of One Republic and Imagine Dragons playing. That reminds me, I have to set a reminder to cancel my free month of Spotify Premium by August 1st. Do you like using headphones or just blast over a speaker?

  • alyssa-silva

    Member
    July 5, 2023 at 10:10 am

    Thanks for introducing yourself! I’m with you— I don’t like classifying myself under a type of SMA. I was diagnosed as type 1 based on the milestones I didn’t reach as a baby but present more as a type 2. So I basically just tell people I have type 1 1/2. 😜

    Legos sound fun. I don’t think you’re ever too old for those. What type of music do you like to listen to?

    • steff

      Member
      July 11, 2023 at 3:57 pm

      hi, thanks for reaching out. I am quite the introvert. Honestly, I can’t listen to pretty much anything as long as it sounds good. I truly do love Beyoncé and well Taylor Swift. You ?

      • alyssa-silva

        Member
        July 12, 2023 at 9:08 am

        I’m also a big fan of Taylor Swift. We definitely have a few Swifties here, too. 🙂 Have you listened to the re-recordings of Speak Now yet? Do you have a favorite? Right now, I’m loving “I Can See You.”

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