Introducing the Raising Rare Podcast

This is a story you want to follow

Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder.  What would your reaction be?  Where would you go for help?  Who would you call?   There are no instructions for a young mother and father to get through the first night, let alone the lifetime of their child.  Their life has been changed forever, just not in the way they expected it would.  They are raising a rare disease child. If this were you, I bet you would leave no stone unturned to find something, anything to help your child.

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 been born with 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 variation 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.
NOW they want to share their story.

A Rare Story Unfolds

Every couple of weeks the Raising Rare podcast 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 face.  Most importantly, we will share the wisdom they gain along the way so that other parents who are raising a rare disease child 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.

Kevin Freiert, Salem Oaks

Listen, Subscribe, Share

We invite you to tune into our first episode of Raising Rare being launched on Rare Disease Day 2020 and subscribe right away so you won’t miss a beat.

Listen to the Trailer

This story is compelling and we are confident you will be rooting for this family. We are so grateful for Sanath’s openness and willingness to share with the world for all the right reasons. He just wants to help others raising a rare disease child.

Raising a rare disease child is a roller coaster.  There are good days.  There are bad days. The smiles create hope!

Raising Rare Sponsorship Opportunities

We know that you and your organization are passionate about helping patients, caregivers, and parents who are facing Rare Disease.  You can be part of this amazing outreach.

We are looking for sponsors for Raising Rare so that we can make this available to as many people in and around the Rare Community as possible.  A small portion of your contribution will pay for the expenses of producing, distributing, and marketing Raising Rare.  More importantly, at least 60% of your contribution will go directly to cureGPX4.org to help them raise the $3 million they need for research.

To learn more, email us at sponsorship@raisingrare.fm

Kevin Freiert

Kevin is the Principal of Salem Oaks Enterprises, LLC. Committed to working with patients, their advocates, biopharmaceutical companies, regulators and other stakeholders to develop educational tools that help patients bridge the gap between themselves and Biopharma R&D.

Works Cited

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