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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 5 replies, 4 voices, and was last updated 4 months ago by Kevin Schaefer.

  • Author
    Posts
    • #18026
      Ryan Berhar
      Member

      In the latest episode of “Ryan’s Robotics,” I talk about how I acquired my JACO robotic arm. I take viewers through the process of testing out a model JACO arm, how I went about fundraising, and what it was like when I started to use mine.

      This video is straightforward, but I hope it will answer some questions for those looking to acquire one of these devices. Feel free to ask me questions here in the forums, and also check out the company’s website at http://www.kinovarobotics.com. Also, be sure to subscribe to the SMA News Today YouTube channel.

       

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    • #18040
      DeAnn R
      Keymaster

      Funding an endeavor like this sounds like no easy task, but I’m glad it worked out for you. I’m sure it will inspire a lot of people to give it a shot.

      • #18060
        Ryan Berhar
        Member

        It’s definitely an intimidating price tag, but I’d hate to see that keep people from going after it. It’s absolutely doable if you’re patient and resourceful.

    • #23047
      Holly
      Participant

      How did you get it for 53,000? When I tried it was 80,000

    • #23054
      Kevin Schaefer
      Keymaster

      Holly really? It was 50K when I got mine in 2015.

    • #23058
      Holly
      Participant

      did y’all have to go through a dealer too?

    • #23062
      Kevin Schaefer
      Keymaster

      So for me, we crowdfunded to raise the money, and then got the arm directly from Kinova. DM me and I can put you in touch with some people there.

    • #23069
      Holly
      Participant

      What about SSI and medicaid, how didn’t you loose benefits with fundraising

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