GROWING UP WITH MICHAEL (1/2): STRENGTHS, RISKS, DEATH

GROWING UP WITH MICHAEL (1/2): STRENGTHS, RISKS, DEATH

🟢 "A premature death that could've been avoided in so many ways." Gary Glissman, ex-Chairperson of AXYS, tells the heartbreaking story of his son Michael, diagnosed with an Extra X at the age of 24 and found dead earlier this year at the age of 37.

In this first of two episodes, you'll hear what Michael was like growing up, the challenges he faced as an adult and the circumstances of his death.

You'll also hear how what might seem to be initially minor challenges in children can result in compounding health, social and professional issues... with irreversible - sometimes fatal - consequences.

Gary has agreed to speak out is to convey a simple, urgent message: that the absence of systematic early screening, intervention and support of common genetic differences comes at unacceptably high cost.

Warning: this episode may contain triggering content for some.

Gary Glissman is senior healthcare executive who started his career as a registered nurse. From 2017 to 21 he was the the Chairman of AXYS, a leading parent advocacy association for X&Y chromosome variations based in the USA. Few people have made a bigger difference for thousands of families and individuals with chromodiversity.

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Episoder(40)

How to Predict Autism in Extra X & Y Children (2/2)

How to Predict Autism in Extra X & Y Children (2/2)

🔴 "Early symptoms of autism spectrum disorder (ASD) in 1-8 year old children with sex chromosome trisomies (XXX, XXY, XYY), and the predictive value of joint attention*" PART 2.Research over the past...

14 Mar 202327min

Last Words With Gary Glissman

Last Words With Gary Glissman

🟢 "I'm a thunderstorm kind of guy" - Gary Glissman, 1950 - 2023.In this podcast you’ll hear two back-to-back episodes with Gary Glissman, recorded October 2022 and re-edited into a single full 45 min...

27 Feb 202343min

How to Predict Autism in Extra X & Y Children (1/2)

How to Predict Autism in Extra X & Y Children (1/2)

🔴 "Early symptoms of autism spectrum disorder (ASD) in 1-8 year old children with sex chromosome trisomies (XXX, XXY, XYY), and the predictive value of joint attention.*" Although not many medical pr...

21 Feb 202327min

"Dazzling Zebras" with Professor Lara Bloom, Pres. & CEO of The Ehlers-Danlos Society

"Dazzling Zebras" with Professor Lara Bloom, Pres. & CEO of The Ehlers-Danlos Society

🟢 "Don't ever underestimate what even 5 minutes of just listening and validating someone's experience can lead to (...). It is the best gift (a doctor) can give any patient."Historically seen as a ra...

13 Feb 202331min

Extra X & Y: Exciting Future Trajectories*

Extra X & Y: Exciting Future Trajectories*

🟢 "Great genetic progress", "exciting early neurocognitive interventions", but "grave deficiency in current testing and care models" around the world. Listen to an easy to understand 25 minute summar...

30 Jan 202326min

 Peter’s XXY Journey Part 2:  A Lifetime of Lessons

 Peter’s XXY Journey Part 2:  A Lifetime of Lessons

🟢 “Had I been diagnosed earlier, how much more could I have accomplished?”In our previous episode “Peter’s XXY Journey Part 1: a 63-Year Diagnostic Odyssey”, Peter Street from Australia compares his ...

24 Jan 202318min

 Peter’s XXY Journey Part 1: A 63-Year Diagnostic Odyssey

 Peter’s XXY Journey Part 1: A 63-Year Diagnostic Odyssey

🟢 “95% of my life has been spent not knowing of my 47,XXY. It was like getting into a boxing ring with as your opponent the invisible man. You never saw where the punches were coming from.”In this ex...

17 Jan 202330min

"Radical Inclusion," Featuring Author Jodi Samuels* (2/2)

"Radical Inclusion," Featuring Author Jodi Samuels* (2/2)

🟢 "Kindness Kills..." Despite all the talk about diversity and inclusion, why are children with genetic differences and disabilities still socially excluded? And what do we plan to do about it?In thi...

10 Jan 202329min

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