Episode 17

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Published on:

26th Sep 2020

Rare Together Watch Together: A Night Of Tears, Smiles, And Reflection

“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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About the Podcast

Raising Rare
Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder.

That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The prognosis is completely unknown.

They were alone.

They were scared.

And then they went into action.

And now they want to share their story.

Every couple of weeks Raising Rare will give you an update on baby Raghav as he grows up. We will also share how Sanath and his wife Ramya are driving toward a treatment for their son. We will explore the science that Sanath is initiating, their efforts to fund that research, and the people they meet along the way. We will also hear how the family adjusts to challenges and changes that they are faced with. Most importantly, we will share the wisdom they gain along the way so that other Rare Parents can learn from their steps and missteps.

We don’t know where this story will go. We do know we want you to join us for the journey.
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About your hosts

Sanath Kumar Ramesh

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Kevin Freiert

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