A podcast echoing rare voices!
Salem Oaks and CureGPX4 present Raising Rare, a podcast that follows a parent’s journey to find a treatment for his son’s ultra rare genetic disorder. The podcast also features stories of other rare disease families, clinicians, researchers and Industry leaders in the rare disease community.
“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.
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. We don’t know where this story will go. We do know we want you to join us for the journey.
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 will also share stories from other families, clinicians, researches and Industry leaders in the rare disease community.
About the Hosts
Kevin Freiert
Founder of SalemOaks, Kevin is a seasoned drug developer with outstanding people skills. Using skills acquired during his 30-year career with Pfizer, Kevin supports patients and their families to navigate disease diagnosis and treatment journey.
Sanath Kumar Ramesh
A software manager working for Amazon, Sanath is the father of Baby Raghav, who was born with a rare genetic disorder. Sanath is not only an active rare disease advocate in the community, but also someone who drives action to find a cure for his son’s rare disease.