Being rare is, by definition, a lonely and hopeless thing. Loving and caring for someone with a rare condition can sometimes feel even more lonely and hopeless. You spend most of your free time thinking how can I help them or influence the health care industry to find a cure for the rare condition my father, mother, child, brother, sister, husband or wife have?
Our guest today is a visionary and inspiration for anyone who has had that lonely hopeless feeling. Sanath Ramesh is the father of a two-year-old boy who is one of only 9 kids worldwide with an ultra-rare genetic disease. It is hard to find conditions that are more unique.
However, Sanath and his wife have found an antidote. Not to the condition for their son, but for the loneliness and hopelessness. And it comes down to two simple things. One – Sharing their story. Sanath has chronicled the good, the bad, and the ugly truths about the journey he is taking with his family on his podcast “Raising Rare.” Two – Crowdsourcing for a cure. Sanath has applied his software wizardry to the creation of the Open Treatments Foundation, an open-source software platform to enable treatments to millions of patients worldwide.
By unapologetically sharing his story, Sanath is giving others the inspiration to do the same. By sharing these stories and giving people hope are enough to change our industry. And it is change we need.
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More About Sanath Kumar
Sanath Kumar Bio
Sanath is a bold and visionary software leader, open source pioneer and a rare disease drug developer. In his career, he has built and launched several successful open source software products. He is now using open source software to enable treatments for 400 million patients worldwide affected with rare genetic diseases through his non-profit organization, OpenTreatments Foundation. He is building the world’s first software platform to decentralize drug development and empower anyone in the world to create a treatment for a genetic disease. He is also the father of a 2 year old boy who is one of 9 kids worldwide with an ultra-rare genetic disease called SSMD (curegpx4.org)
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