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@example.com
LinkedIn – https://www.linkedin.com/in/sanathkr/
Raising Rare Podcast – https://podcasts.apple.com/us/podcast/raising-rare/id1500783011
Please take the SFN Early Intervention Parent Survey and as a token gift, receive a Great Dad Coin – https://tinyurl.com/5n869y2y