Our guest this week is Sanath Kumar Ramesh of San Jose, CA, IL, the father of a son with a super rare disease, a successful tech executive and co-founder of the Open Treatment Foundation.

Sanath and his wife, Ramya, have been married for 7 years and are the proud parents of Raghav, who is 3 and was diagnosed with SSMD or Sedaghatiantype Spondylo Metaphyseal Dysplasia an extremely rare progressive disease.

Sanath is very open and transparent about his early denial. And we learn about Sanath's efforts to create the Open Treatment Foundation, a non-profit dedicated to creating a software platform that streamlines therapy development for any monogenic rare disease regardless of rarity and geography.

We also learn about the Raising Rare Podcast that Sanath hosts to draw attention to the Open Treatment Foundation and efforts to educate, enlighten and inspire those touched by rare disease.

It’s a fascinating and uplifting story about gratitude, overcoming denial, as well as making the most of life, in the face of rare disease.

Open Treatments Foundation - https://www.opentreatments.org
SSMD - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8542321/
Email - [email protected]
LinkedIn - https://www.linkedin.com/in/sanathkr/
Raising Rare Podcast - https://podcasts.apple.com/us/podcast/raising-rare/id1500783011

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Special Fathers Network -
SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 500+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated. There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."

SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.

Special Fathers Network: https://21stcenturydads.org/about-the-special-fathers-network/

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