A podcast echoing rare voices!
The Raising Rare Story
In 2019, Sanath Kumar Ramesh reached out to Kevin Freiert after the Global Genes Rare Summit. He wanted to know, "Why would a big company pay attention to my kid?"
〰️ Salem Oaks and CureGPX4 created Raising Rare in 2020. The original idea was a podcast that follows a parent’s journey to find a treatment for his son’s ultra rare genetic disorder. Sanath Kumar Ramesh is that dad. The conversations expanded to feature stories of other rare disease families, clinicians, researchers and Industry leaders in the rare disease community. This is when the power of the podcast became evident. We were building a a community. A network. A collection of individual chapters in a much larger story.
〰️ In 2023, we added a new co-host. A mom. Britanny Ratke. The community grew in new directions.
〰️ And in 2025, Sanath recorded his last regular episode as a co-host and handed the reins to Brittany.
〰️ In 2026, we continue to adapt and to do our best to reach, uplift, and strengthen the rare disease community.
〰️〰️〰️
In 2019, Sanath Kumar Ramesh reached out to Kevin Freiert after the Global Genes Rare Summit. He wanted to know, "Why would a big company pay attention to my kid?" 〰️ Salem Oaks and CureGPX4 created Raising Rare in 2020. The original idea was a podcast that follows a parent’s journey to find a treatment for his son’s ultra rare genetic disorder. Sanath Kumar Ramesh is that dad. The conversations expanded to feature stories of other rare disease families, clinicians, researchers and Industry leaders in the rare disease community. This is when the power of the podcast became evident. We were building a a community. A network. A collection of individual chapters in a much larger story. 〰️ In 2023, we added a new co-host. A mom. Britanny Ratke. The community grew in new directions. 〰️ And in 2025, Sanath recorded his last regular episode as a co-host and handed the reins to Brittany. 〰️ In 2026, we continue to adapt and to do our best to reach, uplift, and strengthen the rare disease community. 〰️〰️〰️
Everleigh’s Story
About the Hosts
Brittany Ratke
Hi! I’m Brittany Ratke. I’m a Mom to Everleigh & Maverick and wife to Chris, living a busy, love-filled life centered around family and purpose. Our rare disease journey began nearly eight years ago with Everleigh’s birth, shaping our world with resilience, perspective, and a deep appreciation for the everyday moments.
We’re always on the move—whether it’s appointments, sports, school activities, or the next creative project. I love crafting, making banners and signs, and being hands-on in our kids’ school and community.
In the middle all of the chaos, I was fortunate to find a home on the Raising Rare podcast. I am grateful for a platform to share our journey, connect with others, and keep things real and relatable.
Imperfect, resilient, and rooted in love through it all!
Kevin Freiert
Founder of SalemOaks, Kevin is a seasoned drug developer with outstanding people skills. Using leadership skills acquired during his 30-year career with Pfizer, Kevin lifts rare disease patients, families, and organizations as they navigate a system that was not built for them.
Sanath’s Story
“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. They went into action. And now they want to share their story.
Our promise was that Raising Rare would give you updates on baby Raghav as he grows up. We also shares how Sanath and his wife Ramya were driving toward a treatment for their son. We explored the science that Sanath initiated, their efforts to fund that research, and the people they met along the way. We heard how the family adjusted to challenges and changes that they were faced with. We didn’t know where this story would go. We did know we wanted you to join us for the journey.
After 6 wonderful seasons of fulfilling that promise, Sanath took a step back. He had learned along the way that living a high quality life with Raghav is the most important priority. Raghav is relatively stable and they have learned to enjoy life and roll with the surprises.