Raising Rare
Raising Rare
Sep 26, 2020
Rare Together Watch Together: A Night Of Tears, Smiles, And Reflection
Play • 24 min

“Because I look at every single day as a success. If I can have one happy day where Raghav is happy, my family is happy, and I am happy I think I have done something right today.” Sanath Kumar Ramesh 

 On Friday, September 18, Sanath and Kevin had the honor and joy of co-hosting the Rare Together, Watch Together: Film Selections from the Disorder Channel as part of the Global Genes Live (un(Summit) This was the third night of the mini-film festival and the theme was More than a Quest – Success.   

 We watched three films and talked to the Moms of the children featured in each. 

  • Brick in the Wall was the story of Joshua Frase and his family’s extraordinary efforts to find treatments and cures for Myotubular Myopathy (MTM). The story features their quest to establish a large animal model for the disease.   https://www.joshuafrase.org/  
  • Every Second Counts is the story of Hannah Somes who has Giant Axonal Neuropathy (GAN) which has changed her life drastically. However, it has not dampened her spirit as she shares her dreams with us.   https://www.hannahshopefund.org/  
  • Life & Atrophy lets us peek into the world of Miles McIntosh. Miles has Spinal Muscular Atrophy (SMA) and his parents needed to decide whether to enroll him in a clinical trial.   https://raremamas.com/  

Obviously, these stories are emotional, inspiring, and thought-provoking.  You can see them on The Disorder Channel on Amazon Fire or ROKU.   https://www.thedisordercollection.com/   

In this episode of Raising Rare, we debrief our experience behind the scenes as we got to know these families. We hope you can feel our excitement and join in our reflection.   Please consider donating to their causes.

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