Episode 2

Published on:

14th Mar 2020

We Are Not Alone on This Climb

“My thought process is shaped by the people I speak with” - Sanath

When we last talked to Sanath, he and Ramya had no idea what was going to happen next. They were heading into the unknown, and they felt very alone.

In this episode, we discuss how they got started attacking the problem and pulling together the resources they need to find a treatment and cure for Raghav. It is the kind of challenge that you cannot face by yourself. You need a community. You need to talk to people. You need to test your ideas and find your place in that community. The learning curve they faced was steep, if not vertical.

As we have seen, Sanath is a relentless learner. 

You will hear how we met and how he approached this steep climb ahead of him. 

His open-source mindset and his brash approach are positioning him to find early footholds on the shoulders of others who have gone before. But as with any climb, the journey is unique, and it doesn’t take long to find yourself at a new juncture. Do you take the route you have become comfortable with, or do you leap over to a path that few have taken before?

Learn more about cureGPX4

Learn More about Global Genes

Learn more about Salem Oaks

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.
Donate to Cure SSMD

About your hosts

Sanath Kumar Ramesh

Profile picture for Sanath Kumar Ramesh

Kevin Freiert

Profile picture for Kevin Freiert