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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.’”


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    • #24116
      DeAnn R
      Keymaster

      I make videos, moderate the forums and do recordings for many reasons. Mainly though, I want to encourage others to embrace your differences and live your best life. Although it’s not always easy, I think by accepting ourselves it allows others to look past those differences more easily.

      Since my SMA is obvious, maybe it’s not as difficult, but I accepted my differences early on. Two key factors helped me. First, having encouraging parents. Second, surrounding myself with friends who were supportive. Even though my parents were realistic, we all knew walking was out of the question, they did their best to support my interests. Some of the contraptions we came up with to allow me to do certain activities were quite impressive. They also pushed me instead of sheltering me.

      Kids can be cruel. Most of the time it comes from a place of unfamiliarity. They’ve never been exposed to someone who is in a wheelchair or has different abilities than they do. When you can find things in common with others it can be easier for them to disregard the other stuff. If you don’t make a big deal about it, they probably won’t either. But if they do, they don’t need to be your friend. If they stick their foot under your tire and you happen to run it over, so be it.

      I’m certainly not a social butterfly, and I have many insecurities. Funny thing is, a lot of people do, disabled or not. What I can do is accept what makes me who I am and keep doing what I’m doing.

      How do you embrace your differences? Has it been challenging?

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