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  • Introducing me!

    Posted by Kel on February 29, 2024 at 8:31 am

    Hello all! I’m Kellie Cusack! A she/they 24-year-old with SMA type 2! I might look familiar to you as I’ve been advocating since I was 10 and have been active in the community since then! My mom and I are co-chairs for the North Jersey chapter. You also might know me from the incredible Double/Take Fashion Show that was in NYC in 2022 and at last year’s conference! I still am so in shock about the event. It was so fun and SUCH a dream! Finally I write for SpinalMuscularAtrophy.net! I just started last year and am beyond thankful for the opportunity! It’s an absolute dream job to communicate with the community and overall just have important conversations on there of which I discuss most importantly mental health and SMA as well daily living; things that make living with SMA easier! I also have an Instagram that is my passion: @kellilynn99

    In terms of what hobbies I enjoy, I love music, reading (fantasy, romance and some sci fi as well as manga/comics), writing of course, singing (my top three artists are Taylor Swift, Justin Bieber and Charlie Puth!) and gaming! My fav console is my Switch Lite because it’s the lightest to hold and on it I play Disney Dreamlight Valley and Pokémon! I do love Xbox though and have a PC so please leave recommendations below! I heard that they’re is a great gaming group on here!

    Finally I will say that I’m so so thankful for the community! In middle school I denied my SMA and just wanted to fit in. Fast forward to the 2019 conference, my first one as an adult, it opened my eyes to so much. The friendships I have in the community bring me so much joy because we are honest with each other and a bit chaotic which is my favorite! All of my SMA friendships are so positive and I’m so so thankful especially to social media for the connections we have now. 🧡💜

    Oh yeah! I also got a Spaces tattoo for SMA Awareness Month last year with the lyrics in script, spaces spaces I leave my mark upon these places”

    alyssa-silva replied 3 months, 2 weeks ago 2 Members · 3 Replies
  • 3 Replies
  • alyssa-silva

    Member
    February 29, 2024 at 2:23 pm

    Thanks for the introduction! Of course, we’ve known each other for some time through following each other on Instagram. But it’s always nice to get a refresher. 🙂 What does your role entail as the co-chair of the North Jersey chapter?

    • Kel

      Member
      March 5, 2024 at 3:35 pm

      Of course! Thank you for letting me know about this! Mom and I are in charge of events, although we haven’t been involved since the pandemic and are trying to get back into it! Laura Watson currently runs the chapter and we are trying to organize events including a silent auction! Last year’s walk n roll was incredible and we raised so much money! I am so grateful that the chapter is active again. Who was in charge kept changing so it’s nice to be back into it! Advocacy is so nice and I’m so thankful.

      • alyssa-silva

        Member
        March 8, 2024 at 11:59 am

        I feel ya. My nonprofit is planning some in-person events for the first time since COVID, and we’re a little rusty. 😅 We’re slowly dipping our toes into the water again, and it’s really exciting!

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