Episode 8

full
Published on:

6th Jun 2020

We Need Decisions that Lead to Therapies for GPX4

I am all-in for science. I actually get really excited when we discuss all the nerdy science details, but at the end of the day we want therapies and if this group cannot produce therapies, then we have failed in our responsibility. - Sanath Ramesh

We have previously shared the behind the scenes look at how Sanath and Ramya very rapidly adopted a virtual conference format due to the COVID outbreak.  

It turned out that this change served to enhance both the attendance and the effectiveness of the conference. It was a milestone in the search for a treatment and cure for baby Raghav. In this episode, we turn back to the conference to talk about the content and outcomes from that day.  

The importance and power of bringing experts in different fields together to focus on one problem just cannot be overstated.  

Please donate to cureGPX4.org or contact us at info@raisingrare.fm to sponsor the podcast.

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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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