Keith McArthur's Blog

Cure is polarizing. For scientists and rare disease parents, it’s seen it as the holy grail. But in disability politics, it’s sometimes seen as an ablest concept. I speak with disability rights activist Eli Clare about finding the middle ground.

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Eli is a Vermont-based poet, speaker and activist who lives with cerebral palsy.

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The post The Ethics of Cure appeared first on My Instruction Manual.

The notion of curing a rare disease can be controversial. Tom Shakespeare, a bioethicist and disability rights advocate, helps explain why.

Tom Shakespeare is a bioethicist at the London School of Hygene and Tropical Medicine. He’s also a disability rights advocate. Tom was born with achondroplasia, the most common cause of Dwarfism. His disease disorder led to a spinal cord injury in 2008. And, since then, he’s used a manual wheelchair to get around, or leg braces and walking sticks that help him to walk short distances.

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Siblings of kids with complex medical needs also have complicated lives. An interview with a rare disease sibling and her father about Aislinn, a child with GRIN Disorder.

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The post Aislinn’s Story appeared first on My Instruction Manual.

Rare Disease mom Kelly Harris talks about her daughter’s GRIN Disorder Diagnosis, her biggest fears for Layla, and why it’s hard for friends to understand what she’s going through.

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Adam Bolt, director of the documentary Human Nature, joins Keith for a conversation about the incredible possibilities and risks posed by CRISPR Cas-9 gene editing technology.

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The post How CRISPR Will Change the World appeared first on My Instruction Manual.

Keith chats with Dr. Ronni Cohn, the geneticist who diagnosed Bryson’s Rare Disease.

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Episode 88 Show Notes

Dr. Ronald Cohn is a geneticist and the CEO of Toronto’s Hospital for Sick Children.

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The post The Good Doctor appeared first on My Instruction Manual.

When my son Bryson was born, he seemed to be a healthy baby boy. But doctors soon confirmed our worst fears: Something was wrong with Bryson’s Brain.

Today I’m excited to share the first two episodes of Unlocking Bryson’s Brain, a new podcast series I’ve produced in partnership with the Canadian Broadcasting Corporation.

Unlocking Bryson’s Brain is an eight-part serialized story about my son Bryson who has a rare genetic condition that prevents him from walking or talking and keeps his brain locked at the developmental level of a 12-month-old. The podcast explores our family’s search, first for a diagnosis and then for a cure.

It’s partly a father’s memoir, and partly a medical mystery, where I explore topics such as new advances in medical science, the ethics of cure and what it’s like to be the parent of a child with a rare and debilitating disease.

The first two episodes of Unlocking Bryson’s Brain are now live! You can get them wherever you listen to podcasts.

Here are some of the links to listen and subscribe:

Apple Podcasts: Listen here Spotify: Listen hereGoogle Podcasts: Listen hereCBC: Listen here:  Listen here

As I say at the start of the first episode:

During this difficult time, I’m craving great storytelling podcasts that can help me escape. And I think you’ll find that in Unlocking Bryson’s Brain. But this series about searching for a cure for my son’s rare disease is also a microcosm of the discussions going on all around us about a life-changing illness, inadequate testing, funding priorities, the cutting edge of medical science, and the power of hope in a time of darkness.

After you listen to the first couple of episodes, leave a comment below. I would love to know what you think!

The post Unlocking Bryson’s Brain appeared first on My Instruction Manual.

Pandemic Life sucks. But there are some silver linings. We explore them here. And Keith shares a trailer for his new CBC podcast Unlocking Bryson’s Brain.

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Episode 87 Show Notes
[00:00] Welcome and Intro
[7:31] Keith talks with Laura, Connor and Bryson about the parts of this “new normal” that we’d like to keep when we get back to “old normal.”
[20:47] A sneak peak of Keith’s new CBC podcast Unlocking Bryson’s Brain
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The post Pandemic Life appeared first on My Instruction Manual.

We all want to live better lives. In this special episode, host Keith McArthur brings back 8 of his favorite guests to ask them to share the most important life lesson they’ve ever learned. We’ll hear from Melissa Monte, Michael Levitt, Lara Casanova, Amy E. Smith, Jeff Grace, Karen Mangia, Preethaji and Larry Bilotta.

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Episode 86 Show Notes
[00:00] Welcome and Intro
[1:45] Karen Mangia Don’t Postpone Joy

Karen Mangia is author of Success With Less: Releasing Obligations and Discovering Joy. She calls herself a recovering overachiever. Karen first appeared in Episode 75: Achieve More by Doing Less.

[4:10] Jeff Grace: Hard Work + Self-Delusion = Success

Jeff is a Hollywood actor, director, and writer. He’s also the creator and host of the Self-Obsessed podcast. He first appeared in Episode 72: When Self Help Becomes a Cult. He interviewed me on Episode 85: New Year’s Resolutions. 

[8:20] Melissa Monte: Love Yourself Right

Melissa is host of the excellent Mind Love podcast. She also appeared in Episode 66: Escape Your Life’s Prisions.

[12:30] Amy E. Smith: Stand in Your Own Shoes

Amy is a coach, writer, and speaker and she hosts the Joy Junkie podcast.

Amy’s first appearance on the My Instruction Manual podcast came just a couple of months back in Episode 81: How To Stop Worrying What Other People Think.

[14:50] Preethaji: Nurture Connections with Others

Preetha Krishna — better known as Peethaji — is an Indian spiritual and philosophy teacher. She is co-author of The Four Sacred Secrets. She first appeared in Episode 77: Getting Out of Stress and Into a Beautiful State.

 [16:36] Michael Levitt: Take Care of Yourself First

Michael is author of 369 Days: How to Survive a Year of Worst Case Scenarios and he hosts the Breakfast Leadership podcast. Michael first appeared in Episode 67: Becoming a Winner by Losing Everything.

[17:54] Lara Casanova: Follow Your Heart’s Footprints

Lara is author of Grief, Grace and Gratitude. She first appeared in Episode 69: The Art of Grief.

[21:10] Larry Bilotta: Until We’re Truly Hurt, We’re Not Ready to Learn

Larry Bilotta is a relationship expert who first appeared on Episode 78: How To Save Your Marriage.

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The post 8 Life-Changing Lessons appeared first on My Instruction Manual.

Jeff Grace interviews Keith about his book Winning Resolutions and the secrets of successful resolution setting. Jeff is host of the Self Obsessed podcast.

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Where to find Jeff

Website: JeffGrace.com
Instagram: @JeffGrace
Twitter: @JeffGrace
Podcast: Self-Obsessed

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