A nano-rare diagnosis changes more than one life—it transforms an entire family.

In this episode of Realities of the Nano-rare, n-Lorem CEO Stan Crooke sits down with Oliver Glass, Ph.D., MHSc, for an honest and heartfelt conversation about raising a child with DYRK1A syndrome. Together, they discuss the early signs something was wrong, the long search for answers, the realities of daily life, and how their family has adapted to build a new normal.

From daily challenges to unexpected lessons in resilience, love, and perspective, this episode offers a powerful look inside one family’s journey with rare disease.

🎧 Listen now and subscribe for more conversations from the nano-rare community.

Learn more about n-Lorem: https://www.nlorem.org

Episode Chapters

0:00 Intro

1:30 Stan introduces Oliver Glass and his family’s story

7:30 Early signs and symptoms

14:20 Running tests and searching for answers

16:25 The diagnosis journey

23:00 What is DYRK1A?

27:45 Life with Ethan today

32:40 How life looks different as a family

34:00 When the Glass family first heard about n-Lorem

36:20 Biggest worries for the future

38:45 Supporting siblings and balancing attention

43:00 Advice, reflection, and hindsight

#RareDisease #DYRK1A #GeneticDisorders #PatientStory #Podcast #nLorem #CaregiverJourney #FamilyStory

A nano rare diagnosis does not just affect one person. It reshapes an entire family.

Realities of the Nano-rare takes you inside that experience. Hear directly from n-Lorem COO and nano rare mom Sarah Glass as she joins host Stan Crooke to share the day-to-day realities of raising her son Ethan and the ripple effects on their whole family, including his older sister.

Discover how they have adapted, what they have learned, and how they have built a new normal.

Tune in to this powerful two-part series featuring both Sarah and Oliver Glass.

On This Episode We Discuss:

5:08 – Introduction to Sarah Glass and her family's Nano-rare experience

9:00 – Initial challenges of accurately identifying Sarah's son Ethan had a Nano-rare disease

11:30 – Symptoms and telltale signs that there was something else going on with Ethan

14:45 – Identifying that Ethan has DYRK1A

17:20 – Challenges of finding solutions post-diagnosis

20:20 – Navigating Sarah's son's DYRK1A with her unaffected daughter

23: 04 – What's a good day with DYRK1A?

27:01 – What's a bad day with DYRK1A?

34:30 – Managing frustrations of taking care of someone with a Nano-rare disease

37:05 – Compromises in professional life

41:00 – Planning for contingencies

43:10 – Unexpected tender moments of raising someone with DYRK1A

47:30 – Advice for managing expectations, future plans, and working with others

Make sure to check out our sponsor Chemgenes!

Welcome to part two of our series that pulls back the curtain on the scientific and medical breakthroughs that make n-Lorem possible. We call them miracles and without them, n-Lorem would not exist today.

Every day, our patients benefit from what can only be described as miracles of science. Not the fairytale kind. Not wishes granted overnight. These miracles are earned by humans. Built over centuries by scientists whose discoveries stacked, evolved, and refined over time.

They are the result of human curiosity, persistence, and an ever-deepening understanding of biology, and they’ve fundamentally changed how we see the world and treat disease.

Today’s miracle: Induced Pluripotent Stem Cells or iPSCs

iPSCs are a truly transformative scientific breakthrough that are changing what’s possible for nano-rare patients! They allow us to study, test, and personalize treatments in ways that were unimaginable not long ago. For example, they enable n-Lorem to take easily obtained cells, such as skin cells, grow them and then reprogram them into entirely different cell types of interest, like neurons, cells that exist within the brain and would otherwise be inaccessible without invasive procedures. Incredible!

On This Episode We Discuss:

0:53 – What are induced pluripotent stem cells (iPSCs) why they are essential to n-Lorem and personalized medicine

4:25 – The origins of iPSCs began with curiosity and the discovery and study of cells

10:19 – Cell differentiation: How a single cell (fertilized egg) can create such a diverse universe of other types of cells

18:45 – Terminal differentiation: The final stage of a cell's development reaching its final form

21:45 – The iPSC breakthrough and the doors they’ve opened for treatments