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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 3 replies, 3 voices, and was last updated 1 year, 3 months ago by Kevin Schaefer.

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    • #17360
      Patrick Lenihan
      Participant

      My name is Patrick. I grew up in New England and now live the Pacific Northwest with my s/o and our 4 year old black lab. I was diagnosed with SMA in 1966. I am an alumnus of the University of Rhode Island.

    • #17363
      Ryan Berhar
      Member

      Hey Patrick, I’m Ryan, one of the forum moderators. Thanks for joining us!

    • #17379
      Kevin Schaefer
      Keymaster

      Nice to meet you Patrick! I’m 25 with Type 2. I graduated from North Carolina State University in 2016 with a B.A. in English.

      After graduating, I spent some time freelance writing for some nonprofit organizations and websites, and eventually I came across this site SMA News Today. I started writing my weekly column “Embracing My Inner Alien” in April 2017. A few months later I was hired to work full-time for the site’s parent company BioNews Services.

      My role as the SMA News Today Community Editor consists of managing this forum and helping other forum moderators on other BioNews sites, producing podcasts, writing my columns, and engaging regularly with the SMA community. I love it. I’m able to work from home, and still be able to do other projects. I do creative writing as well, and I’ve published a short comic in an anthology, and I’m working on other scripts and stories as well.

      I live at home with my parents, and I have caregivers come to my house throughout the week. I also have a friend drive me to my weekly physical therapy sessions, and I’ve been on Spinraza since November 2017. Feel free to ask me any questions!

    • #18291
      Kevin Schaefer
      Keymaster

      Welcome Aretha! Thanks for joining us!

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