Causepods

In today’s episode, I’m talking with Ramya Ramaswamy whose son, Raghav, was diagnosed with a rare genetic disorder on his first birthday. Since the diagnosis, Ramya and her husband have shared their story, put together a team of leading scientists, raised funds, organized a research conference and are literally fighting their way to a treatment.We discuss the challenges they’ve faced in their journey, including how COVID-19 has literally halted progress on any research being done for this rare genetic disease. We also talk about the importance of getting Raghav’s story out there and how co-hosting a podcast has been a key player in this effort.Ramya also shares with us the fundraising efforts being done to support research in finding not only a cure for Raghav, but also a framework for finding treatment for all rare genetic diseases.Key Topics:·      Ramya tells the story of her son’s diagnosis (1:48)·      What Ramya and her husband have done s