In this episode of the n-Lorem Patient Empowerment Podcast, Stan Crooke explores the “RNA World” — the groundbreaking field of RNA biology that helped make modern genetic medicine possible. Drawing from personal experience, he shares the scientific battles surrounding early RNA discoveries, the development of antisense technology, and how decades of persistence ultimately led to life-changing therapies for nano-rare patients. Along the way, Stan explains how evolution, molecular biology, and information systems inside cells shape human health and the future of medicine.

00:00 – Introduction & Sponsor Message Stan introduces the episode and explains the importance of the RNA World to nano-rare medicine.

02:15 – Why RNA Science Changed Everything How RNA discoveries became foundational to modern genetic therapies.

05:10 – The Scientific Wars Over Small Nuclear RNAs The fierce debates among scientists about whether snRNAs were real or experimental artifacts.

09:40 – What Science Is Really Like Behind the Scenes Stan discusses the emotional and competitive nature of scientific discovery.

13:00 – Antisense Technology & the Road to Spinraza How decades of RNA research led to breakthrough treatments for spinal muscular atrophy.

17:30 – Lessons From Evolution Why evolution reuses successful molecular strategies to create complex life.

22:15 – Families of Genes, Proteins & Molecular Efficiency How biological systems adapt and customize molecular functions.

26:00 – Life as an Information System Stan explains DNA, RNA, proteins, and cells through the lens of information theory.

29:00 – Final Thoughts: Humanity Wins Through Science Why scientific perseverance ultimately benefits patients and society.

A nano rare diagnosis reshapes an entire family.

In Realizing Hope for Layken, Stan Crooke speaks with Callan Pleasant about her daughter Layken and their journey with HNRNPH2.

Callan shares the early signs, the long road to diagnosis, and what it takes to navigate care while holding onto hope. Through n-Lorem, Layken’s story is moving forward with new possibility.

Listen to the full conversation with Callan Pleasant.

Show Notes:

• 1:20 – Introduction of special guest Callan Pleasant and her family, namely her daughter Layken
• 3:50– Parenthood and speed bumps
• 7:30 – First medical consultation regarding Layken
• 9:30 – No such thing as a lazy baby. A second look at Layken
• 10:40 – Finding a diagnosis: HNRNPH2
• 13:50 – Feeling alone after realizing Layken has a nano-rare disease
• 16:30 – Managing frustrations and blaming themselves
• 20:30 – Managing expectations
• 23:00 – Challenging Layken to communicate and move
• 26:30 – Finding solidarity with other families
• 29:30 – London, Layken's sister
• 38:40 – An explanation of HNRNPH2 along with signs and symptoms
• 47:30 – Considering possible treatments and risks
• 49:30 – Taking a leap of faith and submitting for ASO treatment
• 54:00 – n-Lorem providing hope through science
• 56:00 – Layken's first treatment
• 57:30 – Layken's progress
• 58:50 – Positive verbal progression
• 1:01:50 – Callan's advice to families

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

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