100 EPISODES!!!

It is hard to believe that over 6 years ago, we started Raising Rare as an experiment. How would people react to following the life of a young family affected by an ultra-rare disease? The response has been wonderful. The experience has been transforming. We thank Sanath Kumar Ramesh for sharing his stories all these years.

And with our 100th Episode, we start a new era for Raising Rare. Brittany Ratke will be my partner, riding solo in the co-host seat. Brittany and Sanath have shared the co-host role since 2022. With this change, we are going to focus more on Brittany’s family and slowly shape the show to her story and her style. Laughter, tears, and heartfelt questions.

Our hope is that our conversation will bring more people from the rare disease community together. As we reflect, we realize how many amazing people we have met along the way.

Brittany shares some positive developments in their care team, Everleigh’s school, and family life. They even celebrated Rare Disease Day at school.

We also touched on the impact on and of siblings of kiddos with a rare disease. They grow up faster than a lot of kids. They share in ways most people would not realize.

We are looking forward to a great season.

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.

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