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

Playing Without Limits: PKU and the Athlete’s JourneyWith 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 Brady’s childhood through to playing baseball at college and now managing PKU with greater independence.We explore team dinners, travel, low-protein needs and how adapting and asking for support can help athletes pursue their passions without letting PKU hold them back.Show Notes LinksGet in touch with us: [email protected] out more about Ajinomoto Cambrooke: https://rebrand.ly/4e6cdc• LinkedIn: https://rebrand.ly/e2e84b• Instagram: https://rebrand.ly/bac654• Facebook: https://rebrand.ly/c21d50Maridith Baker:• Instagram: https://rebrand.ly/1b642f• LinkedIn: https://rebrand.ly/c3c226• Facebook: https://rebrand.ly/ca7fefResources from Melissa and Brady:• flok Community: https://rebrand.ly/flok-ep13What did you think of today's show? Slide into our inbox and drop your feedback. Your thoughts help us make the pod even better!

From Uncertainty to Action: Building Hope and Changing LivesWith 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: [email protected] Find out more about Cambrooke: www.cambrooke.com/about www.linkedin.com/company/cambrooke-therapeuticswww.instagram.com/ajinomoto_cambrookewww.facebook.com/AjinomotoCambrookeMaridith Baker:www.instagram.com/phenylketonuriaandmewww.linkedin.com/in/maridithbakerwww.facebook.com/maridith.bakerResources from Jon: NOTA: https://notacares.org/NOTA Facebook Page: https://www.facebook.com/tyrosonemiagroup/Tyrosinemia Overview (GARD): https://rarediseases.info.nih.gov/diseases/24099/tyrosinemiaTyrosinemia Type 1 (NORD) https://rarediseases.org/rare-diseases/tyrosinemia-type-1/Newborn Screening Infohttps://newbornscreening.hrsa.gov/conditions/tyrosinemia-type-iTreatment (NTBC / Nitisinone)https://notacares.org/medicationsCambrooke LP Foods and Tylactin:  https://www.cambrooke.com/products/low-protein-foods/https://www.cambrooke.com/products/tylactin/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!

Learning Without Barriers: Navigating School with a Metabolic ConditionWith Dr. Eugene LublinerStarting 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:[email protected] Find out more about Cambrooke: www.cambrooke.com/about www.linkedin.com/company/cambrooke-therapeuticswww.instagram.com/ajinomoto_cambrookewww.facebook.com/AjinomotoCambrookeMaridith Baker:www.instagram.com/phenylketonuriaandmewww.linkedin.com/in/maridithbakerwww.facebook.com/maridith.bakerResources from Eugene: Eugene’s website:https://www.lpsli.com/Lubliner Psychological Services, 2024 NPKUA Presentation:https://www.lpsli.com/npkua2024U.S Department of Education Section 504: https://www.ed.gov/laws-and-policy/individuals-disabilities/section-504What did you think of today's show? Slide into our inbox and drop your feedback. Your thoughts help us make the pod even better!

Finding Your Rare Disease Community: The Power of Being SeenWith Kevin AlexanderKevin 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 NotesGet in touch with us: [email protected] out more about Cambrooke: www.cambrooke.com/aboutwww.linkedin.com/company/cambrooke-therapeuticswww.instagram.com/ajinomoto_cambrookewww.facebook.com/AjinomotoCambrookeMaridith Baker:www.instagram.com/phenylketonuriaandmewww.linkedin.com/in/maridithbakerwww.facebook.com/maridith.bakerResources 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/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!

Cooking for Love: Finding Hope After a PKU DiagnosisWith 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: [email protected] ·      Find out more about Cambrooke: www.cambrooke.com/about o      www.linkedin.com/company/cambrooke-therapeuticso      www.instagram.com/ajinomoto_cambrookeo      www.facebook.com/AjinomotoCambrooke·      Maridith Baker:o      www.instagram.com/phenylketonuriaandmeo      www.linkedin.com/in/maridithbakero      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 | Facebooko      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/B079KSXV8So      Raising an Emotionally Intelligent Child link: https://www.amazon.com/dp/0684838656      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!

Metabolically SpeakingRare conditions, Real stories.From Discovery to Daily Life: How GMP Transformed Nutrition for PKUWith Dr. Denise Ney and David PaolellaDavid and Denise share the story behind GMP and how its discovery transformedthe 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 newmedical 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, reducedstomach 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 notnecessarily reflective of the views of Ajinomoto Cambrooke Inc. Individualexperiences described herein are unique and not necessarily representative oftypical outcomes.  The content shared today is for educational purposes only.Show Notes Find out more about Cambrooke:o www.cambrooke.com/abouto www.linkedin.com/company/cambrooke-therapeuticso www.instagram.com/ajinomoto_cambrookeo www.facebook.com/AjinomotoCambrooke Get in touch with us: [email protected] Maridith Baker:o www.instagram.com/phenylketonuriaandmeo www.linkedin.com/in/maridithbakero www.facebook.com/maridith.baker Resources from David and Denise:o A Whey Forward: The Civilian - A Whey Forwardo Denise’s LinkedIn: Denise Ney | LinkedInMetabolically SpeakingRare 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!

Metabolically SpeakingRare conditions, Real stories.Finding Her Voice in Early Adolescence With PKUWith Norah and StaciAt 11 years old, Norah is learning to navigate early adolescence while living withPKU - balancing school, friendships, jazz band, sports clubs, and the desire tosimply fit in. With support from her Mom, Staci, she’s building confidence andindependence as she learns to manage her condition and advocate for herself.In this episode, Norah shares what it really feels like to grow up with PKU, fromsleepovers and celebrations to managing formula and explaining her condition toothers. Together, Norah and Staci reflect on how their family works as a team tobalance responsibility, independence, and daily PKU care.Join us for this uplifting conversation on Metabolically Speaking, a reminder thatchildren living with PKU don’t want sympathy, they want understanding, normalcy,and the chance to thrive on their own terms.Show NotesFind out more about Cambrooke:www.cambrooke.com/aboutwww.linkedin.com/company/cambrooke-therapeuticswww.instagram.com/ajinomoto_cambrookewww.facebook.com/AjinomotoCambrookeGet in touch with us: [email protected] Baker:www.instagram.com/phenylketonuriaandmewww.linkedin.com/in/maridithbakerwww.facebook.com/maridith.bakerResources from Norah and Staci:NPKUA Mentor Program: Mentor | NPKUAMetabolically SpeakingRare 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!

Metabolically SpeakingRare conditions, Real stories.Thriving with Isovaleric Acidemia: Micah’s Journeywith Justin HensleyThis month on Metabolically Speaking, we’re joined by Justin, who shares hisfamily’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 followed.The conversation covers the realities of navigating care in the early stages, whenlimited guidance meant Justin and his wife had to quickly become advocates andexperts in their son’s condition. Justin speaks about the process of grieving thefuture they once imagined for Micah, while simultaneously fighting for the care heneeded to survive and develop.A central theme of the episode is the role of nutrition as the foundation of metabolic care. Justin shares how nutrition impacts Micah’s energy, focus, emotional regulation, and overall comfort, and why the quality of formula and nutritional support matters. He highlights the impact that accessing the right nutrition, including support from organisations such as Cambrooke Care, has had on Micah’s symptoms and quality of life.We also discuss the importance of community and advocacy, the organisations that have supported Micah’s ongoing development, and what Justin hopes for the future: dignity, stability, increased awareness of metabolic conditions, and equitable access to high-quality nutrition.This episode offers reassurance for families at the beginning of their journey,reminding listeners that they are not alone, and that a diagnosis does not define the person or the caregiver.Show NotesFind out more about Cambrooke:Metabolically SpeakingRare conditions, Real stories.www.cambrooke.com/aboutwww.linkedin.com/company/cambrooke-therapeuticswww.instagram.com/ajinomoto_cambrookewww.facebook.com/AjinomotoCambrookeGet in touch with us: [email protected] Baker:www.instagram.com/phenylketonuriaandmewww.linkedin.com/in/maridithbakerwww.facebook.com/maridith.bakerResources from Justin:Organic Acidemia Association – we care for the rareNational Organization for Rare Disorders | NORDHome | Newborn ScreeningCAMBROOKEcare ReimbursementWhat did you think of today's show? Slide into our inbox and drop your feedback. Your thoughts help us make the pod even better!

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 advocate for something and explore how this may differ as someone living with a metabolic condition and someone supporting or caring for others. Sarah breaks down how storytelling, data sharing, and asking for help can empower individuals. She also emphasises that advocacy isn’t one-size-fits-all: sometimes it’s loud, sometimes it’s quiet, but being transparent about what you need is key. Diving into the science and history, we revisit the low protein diet, a cornerstone of metabolic care since newborn screening began in the 1960s. Every individual’s dietary needs differ, and teaching children the “why” behind their restrictions is essential for confidence, flexibility, and independence.Yet, despite decades of progress, current healthcare systems continue to fall short. Coverage for formula and low-protein foods remains inconsistent, impacting families’ daily lives, opportunities, and even personal decisions such as career and marriage. Diet is central to treatment, and it is healthcare.We celebrate innovations that support families, such as digital tools like the flok app that helps build real-time patient histories, offering new ways to understand day-to-day experiences and inform future care.Looking ahead, Sarah shares her hopes for the future: that baseline needs are met, that access to formula and low-protein foods is no longer a battle, and that understanding and acceptance become standard. Rare disease can be isolating, but coming together, whether online, in person, or through shared stories, creates comfort, community, and growth. Every situation is unique, and every experience matters. Whether you’re living with a metabolic condition, supporting someone who is, or simply seeking a deeper understanding of the community, this conversation is full of honesty, hope, and the reminder that none of us are alone.If you’d like to learn more after listening, you’ll find resources and links in the show notes below. Thank you for joining us! Show Notes  Find out more about Cambrooke: www.cambrooke.com/about LinkedinInstagramFacebookGet in touch with us: [email protected] Baker:Instagram LinkedinFacebookResources from Sarah: Welcome to flok Research  flok | Appflok Together | Facebookflok Health | FacebookPatients & Providers for Medical Nutrition Equity Instagram.com/flokhealthappWhat did you think of today's show? Slide into our inbox and drop your feedback. Your thoughts help us make the pod even better!

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, lifting weights, or simply taking the stairs, movement is essential, and there’s something for everyone.Stephanie shares practical guidance on how to approach exercise safely and sustainably, highlighting the importance of teamwork with your metabolic care team and finding activities that bring joy. We dive into the science of fuelling correctly for exercise. Stephanie explains why carbohydrates are key for energy and how replacing amino acids after activity supports muscle recovery. Whilst debated by many, nutrition timing is considered very important, and for people with IEMs, medical foods or formula can serve as their most effective “sports supplement”.Through inspiring real-life stories, including that of a young boy with PKU who went from dreaming of playing baseball, to being recruited for Division 1 and minor league baseball teams all whilst maintaining healthy Phe levels, Stephanie demonstrates that with the right support, anything is possible.At its heart, this episode is about empowerment through movement. Whether you’re living with an IEM, supporting someone who is, or simply looking to be inspired to move more, this conversation will leave you motivated to take that next step. If you’d like to know more after listening, you’ll find resources and links in the show notes below. Thank you for joining us!   Show Notes Find out more about Cambrooke:www.cambrooke.com/about www.linkedin.com/company/cambrooke-therapeuticswww.instagram.com/ajinomoto_cambrookewww.facebook.com/AjinomotoCambrookeGet in touch with us: [email protected] Baker:www.instagram.com/phenylketonuriaandmewww.linkedin.com/in/maridithbakerwww.facebook.com/maridith.bakerResources from Stephanie:World Health Organization: Physical ActivityImportant notice: Listeners should consult their medical providers prior to making any changes to their activity or treatment plans.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!