Episode 5

full
Published on:

25th Apr 2020

Finding Help in the Land of (Intellectual) Giants

"I was not scared. I was thrilled to be working on a problem this important."

Sanath is determined to find treatments for Baby Raghav’s rare disease and he knows he can not do it alone. He needs experts. Professionals who will not only be able to think about ideas, they can test them too. But he has a problem.

How is he going to attract the serious attention of these scientists? Sure, they want to help a family in need, but they need more to convince them to really commit. Sanath knows very little about the biology of SSMD and he is afraid of looking dumb. He is more afraid that the scientists will turn him down. 

He hatches a plan to draw them into his problem. Listen week how Sanath creates and uses a simple Roadmap to learn more, build his confidence, and overcome his fears.  

Key Links:

Roadmap Chart: https://www.curegpx4.org/roadmap

Roadmap paper in Google Docs: https://docs.google.com/document/d/1v7TIArJsPEnnyf9oleMxhFdSCWK0RVK78K69o7bA82U/edit

Credits:

Sound Design and Music: Jacob Tomkins

Graphics: Ramya Ramswamy

Show artwork for Raising Rare

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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