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Raising Rare - Raising Rare EPISODE 6, 9th May 2020
The First GPX4 Conference Ever (Part 1)

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.

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