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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.


This topic has 2 replies, 2 voices, and was last updated 3 months, 1 week ago by Alyssa Silva.

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    • #22390
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you’re all having a great week so far. Check out the latest installment of the SMA News Today Podcast here.

      In episode 52, I talk with my coworker Luisa Palazola, a Community Manager for SMA News Today. Luisa is from Memphis, Tennessee, and she has another rare genetic condition called cystic fibrosis. During this conversation, she talks about her story and advocacy work, what she’s learned about SMA through her work here, and the upcoming event Rare Disease Day.

       

      To learn more about Spinal Muscular Atrophy, visit http://www.smanewstoday.com.

    • #22401
      DeAnn R
      Keymaster

      Great discussion! It’s easy to draw parallels between SMA & CF. Thanks for sharing your experiences Luisa. You’ve got an awesome spirit. Glad to get to know you even more with this podcast. Keep up the great work with the social media campaigns!

    • #22406
      Alyssa Silva
      Keymaster

      Luisa, you are my WCW every day. This was a great podcast, you guys! It’s amazing how we can all have different stories, yet the thread that weaves us together is the art of storytelling. 😊

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