Get More Raising Rare Podcast

Fighting for Treatment of a Rare Disease with Ramya Ramaswamy of the Raising Rare Podcast

SUBSCRIBE TO 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 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)
Connect with Our Guest on Social
Thanks for Listening!

Be sure to subscribe on Apple, Google, Spotify, Amazon, or wherever you get your podcasts. And feel free to drop us a line at mathew@causepods.org.

Follow Mathew on Social Media to stay up to date on Causepods – Facebook | Twitter | Instagram | LinkedIn

For help, resources, and community support, please join the Causepods Facebook Group if you are already producing podcasts for a cause or are thinking about launching one.

And if you would like to be a guest on Causepods, please fill out this form and schedule your chat here.

Related Episodes