Episode 2

Published on:

30th Jan 2021

Parents Lifting Heavy Cars …There Is No Other Choice

My way is just one of millions of ways in which you can approach a rare diagnosis, you can approach creating a treatment. No one I right, no one is wrong. This is diversity.  Sanath Ramesh

 In Part 2 of our discussion with fellow podcaster and rare mom, Effie Parks, we compare and contrast the different approaches and styles that Sanath and Effie bring to the table for the rare disease community. As we have learned, Sanath likes to solve problems.  Effie brings a different strength – positive energy.

We discuss how life has prepared each of us for what we are doing today. We learn a little about the vastly different childhoods that Effie and Sanath had.  Each has uniquely shaped them to contribute their part to the larger rare community. 

The insight is that together we are stronger.   All our varied contributions serve to inspire others to keep going. 

Once Upon a Gene Podcast,  Once Upon a Gene TV

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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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