About the solution
When Sanath Kumar Ramesh son's was born, his life completely changed, on so many levels. He discovered fatherhood, an unconditional love that he never knew, but also uneasiness about the future. This worry only grew after seeing Raghav (his son) sick, not being able to eat on his own, raise his head or hold a toy. After much research, and several doctor visits, on a sunny day in August, Sanath was informed that a single mutation in his son's genetic code was causing these symptoms. The disease was Sedaghatian type Spondylometaphyseal Dysplasia (SSMD). It causes cardiac arrhythmia and skeletal and central nervous system abnormalities. Now that he knew the culprit, he could begin taking the next steps on his son's health journey!
Unfortunately, it wasn't that easy... Sanath was informed by his son's doctor that nearly all babies with this condition pass away a few weeks after birth. There was no treatment. But he knew that this couldn't be the end of the road.
As a software engineering manager at Amazon, and founder of the OpenTreatments Foundation, he launched an open-source platform called OpenTreatments. The platform is a playbook and collection of resources for people confronting the tremendous challenge of seeking treatments and cures for loved ones with rare diseases. Hopefully, by sharing their lessons and resources on the public site, the families will improve their odds.
This platform allows users to build their treatment roadmap in minutes, get access to an expert science team, Identify partners, negotiate contracts, and kick-start a research phase. it is now in a pilot study with patient lead organizations such as curegpx4 (https://www.curegpx4.org/), idefine (https://www.idefine.org/), curecmd (https://www.curecmd.org/) and inadcure (https://www.inadcure.org/).
Learn more about this solution here https://www.opentreatments.org/
This story was adapted from https://www.geekwire.com/2021/tech-savvy-dad-launches-open-source-platfo...
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This solution shall not include mention to the use of drugs, chemicals or biologicals (including food); invasive devices; offensive, commercial or inherently dangerous content. This solution was not medically validated. Proceed with caution! If you have any doubts, please consult with a health professional.