Episode 14

Published on:

15th Aug 2020

Leaders in the Club Nobody Wanted to Join (Part 2)

“We are in a really lonely, isolating place and none of want to be here. We are all grieving differently. I have the utmost compassion for each one of us.”  Amber Freed

We continue our discussion with guest Amber Freed, Maxwell’s Mom and CEO of SLC6A1 Connect. Sanath and Amber have both found themselves as leaders in their particular disease communities.  This is not a role they wanted to take on, they never competed for membership in this club. 

Their life experiences have prepared them to take a step forward and accept the responsibility leadership brings. We talk about the various challenges they face and how they each have their own way of leading through them. 

We also discuss what they have learned from each other and others in the broader rare disease community. 

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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