Episode 16

Published on:

12th Sep 2020

Anticipation: Experimental Drug Offers Hope

“It was really painful to wait for this medicine to come. But I also believe that when it was the right time, it will definitely happen. And whatever happens is for good.” Ramesh – Baby Raghav’s grandfather.

Way back in episode 004, we heard Sanath talk about how hard it was to write the IND for compassionate use of an investigational drug. Having to express the possibility that his son may die without this intervention was one of the hardest things he has ever done. But he had to do it.

In this very special episode, we get an update on the IND and how far they have come with this experimental drug. We hear about the wait for word from the FDA and all the steps necessary to allow Raghav to get this treatment.  This wait was made even longer by COVID-19.  As you may have figured out by now, Ramya and Sanath handle good news and bad news differently. 

As a special treat, we hear from Sanath’s father, Ramesh. Raghav’s very supportive grandparents have been living through this journey too. They have a slightly different perspective that highlights how a rare disorder affects multiple generations.  

Our discussion feels like a very big hill on a roller coaster. It’s not the only hill they will face, but it is one of the larger ones. 

This is one of our longer episodes, but we think you will find it worth your time.

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Sound Design and Music: Jacob Tompkins

Graphic Design: Ramy Ramaswamy

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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