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 since Raghav’s diagnosis (3:42)

·      What is was like when Ramya found out there were other children with the same diagnosis (6:40)

·      Why Ramya decided to start a podcast about her son’s diagnosis (8:27)

·      How COVID-19 has affected the research efforts to finding a treatment (9:42)

·      The challenge in getting people to take notice in rare diseases who aren’t already directly involved (10:37)

·      How Ramya’s husband built their network of scientists, clinicians, pharmacists, and FDA consultants to advise them on finding a treatment (12:07)

·      Who Salem Oaks is and how they’ve helped Ramya’s family (13:40)

·      How Ramya has faced the challenge of opening up in her podcast (16:00)

·      Ramya talks about the fundraising they are doing and how you can help (17:30)

https://www.raisingrare.fm/

https://salemoaks.com/

Link to Podcast:

Apple – https://podcasts.apple.com/us/podcast/raising-rare/id1500783011

Google – https://podcasts.google.com/?feed=aHR0cHM6Ly9mZWVkcy5jYXB0aXZhdGUuZm0vcmFpc2luZ19yYXJl

Spotify – https://open.spotify.com/show/7zsm4NXUiXVzQwqb6vVqo6

Social Media:

https://www.facebook.com/cureforRaghav

https://twitter.com/sanathkr_

Care and Share - Cure Raghav - https://www.curegpx4.org/

DONATE Link: https://www.curegpx4.org/donate

Thanks for Listening!

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