Episode 6

full
Published on:

9th May 2020

The First GPX4 Conference Ever (Part 1)

“I don’t like the word ‘scientific board.’ I like to use the word team which means everyone is actively involved to solve the problem. They are motivated to solve it and they have one focus, in this case finding a cure for this kid.”  Sanath Ramesh

Sanath has successfully used what he learned from his Roadmap to identify a relatively large group of experts who may be able to help find a treatment for Raghav . But that is all they are – a group. They needed a team.

To get things started, Sanath and Ramya decide to host a scientific conference focused on GPX4. This will give the scientists a chance to meet each other, let Sanath set some expectations, and begin to build a team. It was a great plan. 

The conference was scheduled for March 19 and all the arrangements were coming together. This was a critical milestone in their journey.

On March 13, COVID began closing down the country. In fact, it had already hit Seattle especially hard. 

What would you do? Listen to this episode and hear how they responded.  

Special thanks to Jacob Tompkins for our music and sound editing; and Ramy Ramaswamy for our graphics.

You can listen to Raising Rare directly or subscribe on iTunes, Spotify, Google Podcasts, YouTube, Facebook and more. You can follow us on twitter @Raising_Rare.

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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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