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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 10 replies, 4 voices, and was last updated 11 months, 3 weeks ago by Ryan Berhar.

  • Author
    Posts
    • #20134
      Ryan Berhar
      Member

      Hey everyone, check out the dynamic arm support by Kinova Robotics—the same company that makes the JACO robotic arm. This device attaches to your arm and helps neutralize the forces of gravity, allowing those of us with weaker arms to complete tasks such as eating, drinking, brushing hair, brushing teeth, and typing on a keyboard.

      This can be mounted to either a wheelchair or table. It might be a good alternative to the JACO, as it appears less invasive, and I assume it’s more affordable. I’m going to reach out to Kinova to get more information, and this will likely be the subject of my next YouTube video.

      https://www.kinovarobotics.com/en/products/assistive-technologies/dynamic-arm-supports

    • #20150
      Rachel Markley
      Participant

      Hey Ryan! My OT was looking into this for me. If you find out cost can you let me know please?

    • #20152
      DeAnn R
      Keymaster

      Need to know more! Keep us posted with what you find out. I’d be interested for sure.

    • #20153
      Ryan Berhar
      Member

      I will definitely let everyone know once I learn more.

      • #20193
        DeAnn R
        Keymaster

        I contacted the company to learn more, so we’ll see. Ryan and Kevin, I name dropped hoping for a quicker response. Hope you don’t mind.

    • #20198
      DeAnn R
      Keymaster

      Looking forward to this video Ryan. Here’s what I’ve found out. Out of pocket this device costs $28,400! That’s 1/3 of the cost of my entire house! So far they’ve had some success getting it covered by private insurance and managed Medicare/Medicaid. Straight Medicare/Medicaid won’t even entertain the thought (surprise, surprise that’s my situation.) Vocational Rehab is another funding option, but is a lengthy uphill battle. Fundraising is an alternative as well, but I can’t fathom raising that kind of money.

      Here’s my dilemma, do I still try to set up a demo even though there’s no way I can possibly afford it? I’d feel bad wasting their time, but I’d love to give it a try. I know I’d fall in love with it. Maybe it’s like the Say Yes to the Dress scenario, don’t even try it on if you can’t afford it. Sigh.

      • #20202
        Ryan Berhar
        Member

        I emailed and have not heard back yet. That’s still pretty pricey. I’d definitely do a demo for either this or JACO. You might even be able to try both. Hardly anyone can “afford” these devices, and insurance probably won’t cover them, but you can absolutely fundraise. I know it probably seems insurmountable, but it’s not. I raised $53,000 in two months, and Kevin did it as well.

      • #20210
        Rachel Markley
        Participant

        DeAnn, that’s why my OT and I decided not to demo. She was afraid if I demoed and it even remotely worked, insurance would go for it versus Jaco and Jaco would allow me to do way more.

    • #20334
      DeAnn R
      Keymaster

      Hey guys, I’m so excited, I have a demo scheduled for September 24th! Funding may be a possibility as I guess Minnesota Medicaid has covered them. Fingers crossed!

      • #20335
        Ryan Berhar
        Member

        Congrats! I was told that insurance is covering them about 50% of the time, which I was pleasantly surprised by. Good luck.

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