Episode 15

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Published on:

29th Aug 2020

When Unrelenting Stress Meets The Relentless Parent (Part 3)

“The stress comes from all directions. There is emotional stress. The stress that comes from other people we work with that don’t get things done. And then there is the self-inflicted stress of OMG, I need to do this.  And if I don’t…”  Sanath Ramesh

We continue our discussion with guest Amber Freed, Maxwell’s Mom and CEO of SLC6A1 Connect.  In Part 3 we begin talking about the research strategies they are employing. But our conversation takes an unexpected turn. 

Sanath and Amber discuss the struggles of balancing the demands of finding treatments for their sons with the desire to spend as much time as possible enjoying their boys. The lives they are living are extremely stressful and there does not appear to be a way out of this. They each take their own approaches to this impossible choice. 

Donations can be made for SLC6A1 research at MilestonesforMaxwell.org 

Donations for GPX4 research can be made at cureGPX4.org

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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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