In this episode Ryan sits down with Zara Betts, a seasoned speech and language therapist, mother of two boys with classic galactosemia, and a powerful voice for early intervention. Joining her is her 12-year-old son Fin, who offers his own thoughtful, candid perspective on growing up with the condition.

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Links & Resources Mentioned:

Fin’s YouTube Channel: https://www.youtube.com/@huskygamer16

NYT Gene Therapy: https://www.nytimes.com/2025/05/15/health/gene-editing-personalized-rare-disorders.html

Guest Bio:

Zara Betts is a UK-based speech and language therapist with over two decades of experience in early childhood development. She’s also the mother of two boys with classic galactosemia. Drawing from both professional training and personal experience, Zara has become a passionate advocate for earlier, more accessible speech support for families facing rare metabolic disorders. She currently lives with her family on the island of Guernsey, where she works in both clinical and training roles.

Fin Bets

Fin is 12 years old and has lived with classic galactosemia his entire life. He loves chocolate, editing videos, and hanging out with his friends. His favorite subject in school is English.

00:00 Intro

03:14 Fin's Perspective on Living with Galactosemia

04:57 Zara's Background and Family Life

06:13 Finn's Birth and Early Challenges

08:56 Diagnosis and Initial Struggles

14:25 Reflecting on the Emotional Journey

22:53 Bode's Birth and Different Experience

27:30 Newborn Screening and Healthcare Insights

31:54 Sibling Differences in Galactosemia

34:28 Navigating Medical Support

37:44 Parental Pressure and Child Development

41:07 Empathy and Professional Growth

47:00 Speech Development and Parental Advice

52:28 Fin's Perspective and Future Aspirations

In this week’s episode we look back at the PFDD meeting that led to the Voice of The Patient Report, a landmark document in the fight for better treatment options for those living with Classic Galactosemia

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Watch the full PFDD meeting or download the VOP Report here: https://rarediseases.org/externally-led-patient-focused-drug-development-meeting-for-galactosemia/

00:00 – Introduction

04:00 – Welcome from NORD and the Galactosemia Foundation

05:00 – A History of the Galactosemia Foundation

06:00 – Defining “Unmet Needs” for Classic Galactosemia

07:00 – Clinical Overview with Dr. Judy Fridovich-Keil

13:00 – The Impact of Dietary Management: Life-Saving but Not Enough

17:00 – Long-Term Complications Despite Early Intervention

20:00 – Dr. Sheila Farrah’s Remarks from the FDA

21:00 – First Panel: Family Stories Begin

22:00 – Jillian’s Story: Penelope’s Metabolic Crisis and Ongoing Trials

27:00 – Elaine’s Story: Loss, Disability, and Lifelong Care

28:00 – Cassidy’s Story: Slow Processing, Financial Strain

29:00 – Natalie’s Story: Two Children, Cerebral Palsy, and Hormone Therapy

30:00 – Maureen’s Story: POI and Lifelong Academic Struggles

31:00 – Community Discussion: Seizures, Delays, and Systemic Failures

32:00 – Amber’s Story: Clinical Trial Progress and Tremor Improvement

33:00 – Tiffany’s Story: Speech and Occupational Therapy Needs

34:00 – Heather’s Story: Treatment Access and Out-of-Pocket Costs

35:00 – Amy’s Story: Clinical Trial Experience and the Ethics of Placebo

36:00 – Final Reflections: The Need for Treatment Is Clear

37:00 – Brittany and Scott Close the Meeting: What Comes Next?

In this episode, we dive deep into the groundbreaking science behind Babble Bootcamp, a pioneering early intervention program for children at risk of severe speech disorders. We talked to Dr. Beate Peter: geneticist, speech-language researcher, and co-creator of Babble Bootcamp, to explore how her work is transforming outcomes for children with galactosemia, Down syndrome, and other early-identified developmental risks.

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Links & Resources Mentioned:

Babble Bootcamp Online Course: https://www.northernspeech.com/early-intervention/babble-boot-camp-basic-training/

Guest Bio:

About Dr. Beate Peter

Dr. Beate Peter is a geneticist and speech-language researcher at Arizona State University whose work bridges the fields of behavioral genetics and speech-language pathology. With a background in clinical speech therapy and a PhD in communication sciences and disorders, she is internationally recognized for her research into the genetic foundations of speech disorders, including apraxia of speech.

Dr. Peter is a co-creator of Babble Bootcamp, the first proactive, parent-implemented speech intervention designed specifically for infants with known genetic or developmental risks—starting as early as birth. Her work has focused on children with classic galactosemia, Down syndrome, Bainbridge-Ropers syndrome, and other conditions, aiming to build resilience through early, targeted language support. She is also a passionate educator and advocate for making cutting-edge speech therapy accessible to families around the world.

Episode Chapters:

00:00 – Introduction: Meet Dr. Beate Peter

02:00 – The Birth of Babble Bootcamp

06:00 – Dr. Peter’s Unlikely Path from Literature to Genetics

09:00 – What Are Genetic Substrates of Speech?

11:00 – Building Resilience in At-Risk Infants

13:00 – Early Intervention in Galactosemia: A New Model

15:00 – Battling Policy Barriers to Infant Speech Services

17:00 – Global Expansion: Australia and Canada Join the Movement

19:00 – What Exactly Is Babble Bootcamp?

21:00 – The First Pilot Study: Cheese-Its and a $8,000 Grant

23:00 – Weekly Zooms, Parent Coaching, and a Million-Dollar NIH Grant

25:00 – Rethinking Clinical Trials: Creating an Ethical Control Group

28:00 – The Babbling Graph: Data That Changed the Game

32:00 – Listening to Babble: What the Sounds Reveal

35:00 – From Babble to Words: Why It Matters

38:00 – Parent-Led Therapy and the Power of Dosage

42:00 – Real Families, Real Outcomes

45:00 – Empowering Parents with Knowledge

47:00 – A Mother of Five and a Sixth Child’s New Path

49:00 – The Genetics of Speech: Current Landscape and Gaps

51:00 – Enter Down Syndrome: Babble Bootcamp Adapts

54:00 – Tailoring Strategies to Visual, Hearing, and Motor Challenges

56:00 – Proof of Concept: Galactosemia’s Lasting Impact

58:00 – Strategy Roundup: What to Do at 2, 5, 8, 14, and 24 Months

1:06:00 – Where to Learn More & How to Get Involved

1:08:00 – Final Thoughts and a Thank You to Dr. Peter