Episode 16

full
Published on:

21st Aug 2021

MIllions of Families... One Rare Disease Story

"If all you do is take care of your child, you are doing it right." Daniel DeFabio

In part 3 of our series with the founders of The Disorder Channel, Daniel DeFabio and Bo Bigelow, we learn how their partnership began and how it has grown. Their story is one that has several chapters. We talk about how every family affected by a rare disease has their own unique story but in some ways it is the same story.

When both Daniel and Bo found out their children had a rare disease, they followed the same path many familes do. FIght for the child, learn to advocate on their behalf, and then finding a new unexpected life. For these two Dads, they followed thier skills, and passions to create two mainstays of the rare disease world, Disorder - The Rare Disease FIlm Festival and The Disorder Channel on ROKU and amazon Fire

However, they were quick to point out that not everyone can or should take their advocacy to such lengths. Some people are comfortable telling their story publicly. Others are more comfotable fundraising. Others lend a hand where possible, And still others just need to pay attention to the kid right in front of them. ALL of these are OK. The point is that being thrown into this situation will help you clearly discover what you were meant to do.

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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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