8 - Caring in a Crisis Pt 3 - A Rare Disease Family: Keith McArthur

Keith’s son Bryson is a charming and outgoing 13-year old who loves his family, friends, and school. But he faces tremendous challenges. He lives with a rare genetic disease that has his brain locked at the developmental level of a 1-year old. The closure of schools has been especially hard on Bryson as he no longer has access to many of the tools he uses for therapy.

Keith, host of the CBC Podcast ‘Unlocking Bryson’s Brain’, talks about life as a rare disease dad, the impact COVID has had on his family, and his search for a cure to Bryson’s brain disease.

About Keith

Keith McArthur is an author, speaker, kidney transplant survivor, and rare disease dad. He is the host of the CBC Podcast Unlocking Bryson’s Brain, an 8-part documentary-style podcast about his son Bryson, his rare disease, and his family’s search for a cure. Keith is also the CEO and Head of Science for CureGRIN, an organization dedicated to finding cures and therapies for people around the world suffering from GRIN disorders.

A full transcript with photos is available in the show notes

Links

Listen to Unlocking Bryson’s Brain on CBC Listen, Apple Podcasts, Google Podcasts, or wherever you listen.
To help support research into GRIN disorders, you can donate to: CureGRIN or U of T’s GRIN Disorders Research Fund
Follow Keith on Twitter
Follow CureGRIN on Facebook, Instagram, and Twitter
Follow Discomfort Zone on Facebook, Instagram, and Twitter

Credits

Written, Hosted, Produced, and Sound Designed by: Jason Herterich
Video Editor: Raihan Hussain
Associate Producer: Rahima Mulla
Audio Engineer: Justin Maradin