Metabolically Speaking

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 world.
Together, we explore how isolation can be transformed into connection, how small steps can lead to extraordinary impact, and why you don’t need to be an expert to change lives.
Disclaimer: The opinions expressed here are those of the guests/authors and not necessarily reflective of the views of Ajinomoto Cambrooke Inc. Individual experiences described herein are unique and not necessarily representative of typical outcomes. The content shared today is for educational purposes only.
Show Notes Links (to be adapted based on episode discussion and smartlinks added) 
Get in touch with us: 
MetabolicallySpeaking@cambrooke.com 
Find out more about Cambrooke: 
www.cambrooke.com/about 
www.linkedin.com/company/cambrooke-therapeutics
www.instagram.com/ajinomoto_cambrooke
www.facebook.com/AjinomotoCambrooke
Maridith Baker:
www.instagram.com/phenylketonuriaandme
www.linkedin.com/in/maridithbaker
www.facebook.com/maridith.baker

Resources from Jon: 
NOTA: 
https://notacares.org/
NOTA Facebook Page: 
https://www.facebook.com/tyrosonemiagroup/
Tyrosinemia Overview (GARD): 
https://rarediseases.info.nih.gov/diseases/24099/tyrosinemia
Tyrosinemia Type 1 (NORD)
 https://rarediseases.org/rare-diseases/tyrosinemia-type-1/
Newborn Screening Info
https://newbornscreening.hrsa.gov/conditions/tyrosinemia-type-i
Treatment (NTBC / Nitisinone)
https://notacares.org/medications
Cambrooke LP Foods and Tylactin:  
https://www.cambrooke.com/products/low-protein-foods/
https://www.cambrooke.com/products/tylactin/
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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 his experience as a parent to a daughter living with PKU. Through years of supporting families and navigating the system himself, he has developed a deep understanding of what meaningful support at school really looks like.
Together we explore how accommodations can support wellbeing and academic success, what parents can do to prepare, and how needs evolve over time. We’re also joined by a very special guest, Eugene’s daughter, Addie, who shares her own experience of school life with PKU.

Disclaimer: The opinions expressed here are those of the guests/authors and not necessarily reflective of the views of Ajinomoto Cambrooke Inc. Individual experiences described herein are unique and not necessarily representative of typical outcomes. The content shared today is for educational purposes only.

Show Notes:
Get in touch with us:
MetabolicallySpeaking@cambrooke.com 
Find out more about Cambrooke: 
www.cambrooke.com/about 
www.linkedin.com/company/cambrooke-therapeutics
www.instagram.com/ajinomoto_cambrooke
www.facebook.com/AjinomotoCambrooke
Maridith Baker:
www.instagram.com/phenylketonuriaandme
www.linkedin.com/in/maridithbaker
www.facebook.com/maridith.baker
Resources from Eugene: 
Eugene’s website:
https://www.lpsli.com/
Lubliner Psychological Services, 2024 NPKUA Presentation:
https://www.lpsli.com/npkua2024
U.S Department of Education Section 504: 
https://www.ed.gov/laws-and-policy/individuals-disabilities/section-504
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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.
In this episode, we explore Kevin’s personal journey from quietly navigating his condition to recognizing the profound impact of shared experience. He reflects on the pivotal moment when opening up through a single personal story sparked a much wider conversation about finding belonging within the rare disease space. We delve into the importance of vulnerability, the search for connection, and what it really means to finally feel understood by those around you.
We also hear about Kevin’s broader mission to elevate patient voices through his various storytelling platforms. At its heart, this is a conversation about moving beyond the clinical diagnosis, the unifying power of shared narratives, and ensuring that everyone living with a metabolic condition knows they are not alone.
Disclaimer: The opinions expressed here are those of the guests/authors and not necessarily reflective of the views of Ajinomoto Cambrooke Inc. Individual experiences described herein are unique and not necessarily representative of typical outcomes. The content shared today is for educational purposes only.
Show Notes
Get in touch with us: MetabolicallySpeaking@cambrooke.com
Find out more about Cambrooke: www.cambrooke.com/aboutwww.linkedin.com/company/cambrooke-therapeutics
www.instagram.com/ajinomoto_cambrooke
www.facebook.com/AjinomotoCambrooke

Maridith Baker:www.instagram.com/phenylketonuriaandme
www.linkedin.com/in/maridithbaker
www.facebook.com/maridith.baker

Resources from Kevin:Home - PKU Journal:
https://pkujournal.com/

Never Give Up: A Rare Disease Podcast:
https://pkujournal.com/never-give-up-a-rare-disease-podcast/

My PKU Life - PKU Journal:
https://pkujournal.com/my-pku-life/

For Katy: A Film About Newborn Screening:
https://pkujournal.com/for-katy-a-film-about-newborn-screening/

E.S.PKU | Official E.S.PKU Website:
https://www.espku.org/

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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 how Brenda taught herself to cook low-protein meals through trial, error, and plenty of kitchen disasters, before rediscovering her love of cooking at culinary school. She reflects on the satisfaction of mastering recipes, the importance of taking that first step, and how simple, playful approaches, like turning food weighing into a game, can help children build confidence and independence. Brenda also shares practical advice for families, from building relationships with local restaurants to becoming part of a supportive community early on.
We also hear the story behind Cook for Love, and how Brenda’s personal mission grew into a global resource supporting hundreds of families navigating PKU. At its heart, this is a conversation about resilience, inclusion, and ensuring that every child, regardless of dietary restrictions, can feel the joy of food and the experiences that come with it.
Disclaimer: The opinions expressed here are those of the guests/authors and not necessarily reflective of the views of Ajinomoto Cambrooke Inc. Individual experiences described herein are unique and not necessarily representative of typical outcomes.  The content shared today is for educational purposes only.
Show Notes 
·      Get in touch with us: MetabolicallySpeaking@cambrooke.com 
·      Find out more about Cambrooke: www.cambrooke.com/about 
o      www.linkedin.com/company/cambrooke-therapeutics
o      www.instagram.com/ajinomoto_cambrooke
o      www.facebook.com/AjinomotoCambrooke
·      Maridith Baker:
o      www.instagram.com/phenylketonuriaandme
o      www.linkedin.com/in/maridithbaker
o      www.facebook.com/maridith.baker
·      Resources from Brenda: 
o      Cook For Love Website: Cook for Love - Low-Protein Recipes 
o      Cook For Love Facebook: Cook for Love - Low Protein Cooking for the PKU Community | Facebook
o      America's Test Kitchen Perfect Vegetables link: https://www.amazon.com/dp/0936184698 
o      America's Test Kitchen Just Add Sauce link: https://www.amazon.com/dp/B079KSXV8S
o      Raising an Emotionally Intelligent Child link: https://www.amazon.com/dp/0684838656
 
 
 
 
 
 
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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 protein intake easier to manage throughout the day, to helping people feel fuller for longer.

We also discuss reported benefits such as improved digestive comfort, reduced
stomach pain and heartburn, and how GMP can better support more active lifestyles compared to traditional formula.

David and Denise also unpack the challenges of bringing medical foods to market,
including the cost, complexity, and need for extensive human trials. At its heart, this is a conversation about partnership and how collaboration across communities, clinicians, and industry has helped create more choice and flexibility for people living with PKU.
Disclaimer: The opinions expressed here are those of the guests/authors and not
necessarily reflective of the views of Ajinomoto Cambrooke Inc. Individual
experiences described herein are unique and not necessarily representative of
typical outcomes.  The content shared today is for educational purposes only.

Show Notes

 Find out more about Cambrooke:
o www.cambrooke.com/about
o www.linkedin.com/company/cambrooke-therapeutics
o www.instagram.com/ajinomoto_cambrooke
o www.facebook.com/AjinomotoCambrooke
 Get in touch with us: MetabolicallySpeaking@cambrooke.com
 Maridith Baker:
o www.instagram.com/phenylketonuriaandme
o www.linkedin.com/in/maridithbaker
o www.facebook.com/maridith.baker
 Resources from David and Denise:
o A Whey Forward: The Civilian - A Whey Forward
o Denise’s LinkedIn: Denise Ney | LinkedIn

Metabolically Speaking
Rare conditions, Real stories.
What did you think of today's show? Slide into our inbox and drop your feedback. Your thoughts help us make the pod even better!