Metabolically Speaking

Playing Without Limits: PKU and the Athlete’s Journey
With Melissa and Brady 

Managing PKU can be challenging on its own. But when you add the demands of competitive sport, from fuelling and team meals to travel and busy training schedules, it can bring another layer of planning and problem-solving for both athletes and their families.

In this episode, we’re joined by Brady, a lifelong athlete and current graduate student training to become a physical therapist, alongside his mum, Melissa. Together, they share their family’s experience of navigating PKU alongside sport...

From Uncertainty to Action: Building Hope and Changing Lives
With Jon Miller 

When a child is diagnosed with a rare metabolic condition like Tyrosinemia, it can bring overwhelming uncertainty for families - alongside questions, fear, and no clear roadmap for what comes next.

In this episode, we’re joined by Jon Miller, Founder and President of the Network of Tyrosinemia Advocates (NOTA), who shares his family’s journey from diagnosis to action. What began with one father trying to find connection and answers has grown into a global community supporting families around the w...

Learning Without Barriers: Navigating School with a Metabolic Condition
With Dr. Eugene Lubliner

Starting school is a significant milestone for any child, but when a rare metabolic condition like PKU is part of the picture, it can bring added layers of uncertainty.  Alongside school routines and making new friends, there are important considerations around meals and snacks, day-to-day treatment, and ensuring children feel supported in their learning.

In this episode, we’re joined by Dr. Eugene Lubliner, psychologist and school specialist, who offers a unique perspective shaped by both his professional work and...

Finding Your Rare Disease Community: The Power of Being Seen
With Kevin Alexander

Kevin Alexander shares how living with a rare metabolic condition can often become deeply focused on the practical side of management from strict diets to clinics and daily routines. What can sometimes get lost in these necessities is the bigger picture of connection and belonging. As a PKU advocate and storyteller, Kevin opens up about his ongoing work to bring greater visibility to the true lived experience of PKU, exploring how identity and community shape everyday life in often unseen ways.<...

Cooking for Love: Finding Hope After a PKU Diagnosis
With Brenda Winiarski 

Brenda Winiarski shares her journey from speech pathologist to chef, shaped by the moment her daughter was diagnosed with PKU through newborn screening. What began as fear and uncertainty soon became a determination to ensure her daughter could still experience the joy, connection, and celebration that food brings to everyday life. Along the way, Brenda opens up about the sense of loss many parents feel, and how she channelled that into something hopeful and empowering.

In this episode, we explore h...

Metabolically Speaking
Rare conditions, Real stories.

From Discovery to Daily Life: How GMP Transformed Nutrition for PKU
With Dr. Denise Ney and David Paolella

David and Denise share the story behind GMP and how its discovery transformed
the landscape for people living with PKU. From early research to real-world impact,
they reflect on the importance of involving the PKU community in developing new
medical foods and ensuring they truly meet patients’ needs.

In this episode, we explore how GMP can support quality of life, from making pr...

Metabolically Speaking

Rare conditions, Real stories.

Finding Her Voice in Early Adolescence With PKU

With Norah and Staci

At 11 years old, Norah is learning to navigate early adolescence while living with
PKU - balancing school, friendships, jazz band, sports clubs, and the desire to
simply fit in. With support from her Mom, Staci, she’s building confidence and
independence as she learns to manage her condition and advocate for herself.

In this episode, Norah shares what it really fe...

Metabolically Speaking
Rare conditions, Real stories.

Thriving with Isovaleric Acidemia: Micah’s Journey
with Justin Hensley

This month on Metabolically Speaking, we’re joined by Justin, who shares his
family’s deeply personal journey of parenting a child with Isovaleric Acidemia (IVA). 

Justin explains what IVA is and how his son, Micah, was diagnosed through newborn screening. He discusses the challenges his family faced as first-time parents, including an early metabolic crisis that resulted in permanent neurological impact, and the fear and uncertainty that fo...

This month on Metabolically Speaking we’re joined by Sarah Chamberlin, founder and Executive Director of flok Health and parent to a daughter with PKU. 

A recurring theme on the Metabolically Speaking podcast is the power of community, and this episode is no exception. We explore the story behind flok; why it exists, what it hopes to change, and how its name represents people coming together for protection, support, and progress. Sarah shares how flok is determined to drive research and improve care for everyone in the metabolic community. 

We discuss what it means to advo...

This month on Metabolically Speaking, we’re joined by Stephanie Hacker, a Metabolic Dietitian and Newborn Screen Program Manager at the University of Miami. 

With years of experience supporting individuals with inborn errors of metabolism (IEMs), Stephanie is passionate about helping people live active, balanced, and fulfilling lives. 

In this insightful episode, Stephanie and host Maridith Baker explore the powerful connection between physical activity, health, and quality of life. Whilst research into IEMs and fitness remains limited, Stephanie shares that evidence on the benefits associated with being active is universal. Whether it’s walking, dancing, liftin...

This month on Metabolically Speaking, we’re joined by Brittany Murray, a doctoral graduate, public speaker, and nurse practitioner at one of the world’s leading pediatric institutions. She’s also living with PKU. 

 In this inspiring episode, Brittany shares how she’s come to see her condition not as a limitation, but a gift. From her early involvement in the PKU community to building a career in healthcare, Brittany uses her experience to empower others living with rare metabolic conditions. Her journey is one of purpose, passion, and advocacy.

Together with host Maridith Baker, Brittany e...

This month on Metabolically Speaking, we’re joined by pediatric neuropsychologist Dr. Kendra Bjoraker. With specialized expertise in rare genetic and metabolic conditions, Kendra has dedicated her career to supporting individuals and families as they navigate challenges, celebrate strengths, and hold onto hope.

Kendra, and host Maridith Baker, dive into the realities of living with both a mental health condition and a metabolic condition, and how persistence, adaptation, and cognitive flexibility are essential parts of the journey. From formal definitions of depression and anxiety to stark statistics and practical coping strategies, Kendra sheds light on what it me...

Welcome to the very first episode of Metabolically Speaking!

We’re kicking things off with an inspiring conversation you won’t forget. Our first guest is a community advocate, leader, and founder of Cambrooke; Lynn Paolella. 

In this episode, Lynn shares her experience on receiving not one, but two PKU diagnoses in her family and how those life-changing moments ignited the creation of Cambrooke, a global innovator in the field of advanced medical nutrition. She shares the highs, the lows, and all of the moments in between. 

Joined by host Maridith Baker, we explor...

Living with a metabolic condition is about embracing more. More things you can do, more you can enjoy, and more adventures along the way. 

Metabolically Speaking unpacks the perceived challenges facing individuals and families living with inherited metabolic conditions. Host Maridith Baker, who knows firsthand what it means to live fully with PKU, brings her unique spark, energy and deep curiosity to every conversation. 

Through expert interviews and shared experiences, each episode blends metabolic knowledge with practical advice. Covering topics such as identity, relationships, mental health, advances in research and the ordinary moments th...