Discomfort Zone Jason Herterich

I was too sick to attend my sister’s wedding, so she wasn’t expecting me to deliver a speech.

My gym teacher ridicules me in front of my peers, prompting the question: was my child-acting career a fluke? If so, what does that say about my legacy? What does free pizza have to do with any of this?

Keith has dedicated the past few years of his life to finding a cure for his son Bryson who lives with a rare brain disease that has left him unable to walk or talk. But along the way, he began asking himself, "Would Bryson want to be cured?"

In Part 2 of our interview, Keith discusses the ethical considerations surrounding curing a disability, the motivation behind his podcast Unlocking Bryson’s Brain, and the lessons he's learned from Bryson.

If you haven’t listened to part 1 yet, click here to listen.

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.

Lindsay is no stranger to adversity. While most 11-year olds were out playing with their friends, she was at home caring for her mom. Now a front-line healthcare worker in the midst of a pandemic, she is faced with unprecedented challenges. Lindsay shares her insights on how the government could ensure the safety of personal support workers and their clients.

Early in the pandemic, Melissa spent all day on the phone with disabled people living in fear of COVID-19. Their fears echoed many of her own. Melissa shares her recommendations on how the government can better meet the needs of the disability community.