Raising Rare cover art

Raising Rare

Raising Rare

By: Raising Rare
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 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.Copyright 2020-2024 Salem Oaks LLC Biological Sciences Hygiene & Healthy Living Parenting & Families Physical Illness & Disease Relationships Science
Episodes
  • Leaving a Legacy - Sanath Kumar Ramesh

    Leaving a Legacy - Sanath Kumar Ramesh
    Jan 5 2026

    Almost 7 years ago, Sanath Kumar Ramesh found out his son had an ultra-rare mutation.

    This began a journey that would force him to grow into a man he never imagined. Part of his journey was this podcast, Raising Rare. Now, after completing our sixth season, Sanath is going to step back from this microphone.

    In this episode, we reflect on our beginnings, our favorite conversations, and the deep connections that we have developed with each other and our co-host Brittany Ratke.

    And with that... we close Season 6.
    Show More Show Less
    44 mins
  • Rare Men, Rare Wellness – David Hogan

    Rare Men, Rare Wellness – David Hogan
    Dec 9 2025

    How do you tell whether a zebra is male or female?

    The male doesn’t’ talk about their #raredisease.

    This can be hard on them. There have been very few places for them to gather to take care of their #mentalhealth. David Hogan set out to change this when the COVID pandemic threatened to isolate us all even more. David is affected by Cowden’s syndrome, and his mother had the condition as well. When she died, he felt the full weight of rare disease on his own mental wellbeing.

    He noticed that there were many places for women to gather, but it was not a great place for men to show their vulnerabilities. We needed something different.

    David took action and started inviting men in the rare disease community into conversation. Those conversations have now become the Men’s Rare Wellness Forum, a monthly opportunity for the male zebras to take care of themselves and each other. All men in the rare community – patients, Dads, brothers, caregivers, and providers – are invited.

    You can learn more about the Men’s Rare Wellness Forum by reaching out to David at mensrarediseasemh@gmail.com or searching “@mensrarediseasemh” on Instagram or David Hogan on LinkedIn
    Show More Show Less
    30 mins
  • Plans Change. Dreams Shift. - Mariah Swanson

    Plans Change. Dreams Shift. - Mariah Swanson
    Nov 6 2025

    “This journey has changed our lives, has reshaped my identity. Plans change, dreams shift. I've had to learn to become more than just a mom.”

    Mariah only started this journey earlier this year. She has climbed the initial learning curve very quickly and has used her professional skills to navigate the logistical, interpersonal, and emotional twists that rare diagnosis brings. She even found time to talk to us on Raising Rare.

    Her younger son has GRIN2A. Like many kiddos with rare diagnoses, Marcus shines a light that helps him connect with people. While he doesn’t use words, his smile and deep dimples are his secret weapons.

    Mariah has a very simple outlook. “Marcus has a rare diagnosis, but he also deserves the same shot at a full thriving life.” She and her husband have embraced the uninvited challenge of helping him find that.

    We are sure you will be inspired by their spirit.

    Show More Show Less
    33 mins
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