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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 1 month, 4 weeks ago by Abby.

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    • #22901
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you’re all staying safe, and that no one’s going stir crazy.

      Since we’re all on lockdown, I wanted to recommend a Netflix documentary. Crip Camp is now streaming, and I watched it the other night. This film provides a glimpse into the disability rights movement, and it features several prominent disability activists.

      Executive produced by Barack and Michelle Obama, Crip Camp tells the story of a summer camp in the 50s and 60s for teens with disabilities. Camp Janed took place around the same time as Woodstock, and it reflected the same kind of social revolution. Teens at this camp played rock music, smoked, and engaged in sexual relationships. Needless to say, it was a little different from MDA camp.

      The first half of the film focuses on the actual camp, and then it explores how many of the participants became pioneers of the disability rights movement. At the forefront is Judy Heumann, whose advocacy led to the passing of section 504 of the Rehabilitation Act. This film covers a lot of ground, but directors Jim Lebrecht and Nicole Newnham do a phenomenal job telling a cohesive story.

      Has anyone else here seen the movie? I’d love to discuss it with you all!

    • #22922
      Alyssa Silva
      Keymaster

      I haven’t seen it yet but have been seeing a lot of buzz about it! Definitely going to watch it this week.

    • #22927
      Abby
      Participant

      I can’t wait to watch it this week!  If anyone wants to do a Netflix hang out or have a mini screening party we should!

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