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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 1 reply, 2 voices, and was last updated 8 months, 2 weeks ago by Helen Baldwin.

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    • #21486
      DeAnn R
      Keymaster

      Here at SMA News Today we have top notch columnists who share personal stories about their lives connected with SMA.  Although everyone’s experiences are unique, we share that SMA connection in one way or another.  That’s why I love reading the columns and want to share the latest ones with you.  To check them out for yourself go to here and click on the SMA Columns tab.

      One of the most recent columns by Michael Casten is titled Dealing with Additional SMA Challenges as We Battle Illness.  He talks about how his family is battling cold and flu season.  Several family members have taken ill and it’s always concerning when one of those members has SMA.  I always get that feeling of dread when someone in my family gets sick.  As with the Casten’s we do our best to keep the germs contained but sometimes despite our best efforts others do catch it.  How do you deal with family illness?

      A Lifelong Friendship Started with a Thud by Helen Baldwin details how she met one of her good friends.  She explains how there are moments in life that just hit you out of nowhere.  Her son’s diagnosis being one of those.  It was because of that diagnosis she met a forever friend.  Has SMA brought friendship into your life?

      Sometimes I forget that everyone’s journey with Spinraza is different.  In a column, My Quest for Spinraza, the Elixir of Life by Kala Godin, she details where she’s at in the process of seeking Spinraza.  She certainly has some of the same questions and concerns I had starting out.  Mainly the question of if it’s possible to get Spinraza with a fused spine.  In my case the answer is yes.  What’s your journey been like?

      Halloween Proved to Be a Treat for Me by Halsey Blocher is a really nice column outlining how by handing out candy on Halloween she made some great connections.  I’ve always loved how honest kids can be.  Furthermore we can learn a lot from them.  Likewise by interacting with children we also teach them.

      Those are just a few of the most recent columns.  To see more head to smanewstoday.com.  Have a great day everyone.

    • #21537
      Helen Baldwin
      Participant

      Thank you for highlighting some of the columns, DeAnn! I see so many terrific topics covered by ‘real’ people, and I’m sure it’s not just those writing about SMA. Some day I hope to have enough time to read and get to know everyone 🙂

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