MEF2Cast

Core Conversations: Cody and Shawnacy Bruce

In this Core Conversation, we revisit our conversation with Shawnacy and Cody Bruce, parents navigating the beautifully complex world of raising two daughters—one of whom, Boston, has developmental delays and CVI. With honesty, humor, and deep love, they share what it has looked like to move through early questions, sleepless stretches, and the emotional weight of receiving a diagnosis, all while discovering the joy tucked into every small win along the way. Cody talks openly about becoming a proud “girl dad,” the unexpected lessons that come with sleep deprivation, and the growing bond he shares with Boston. Shawnacy reflects on the moment everything changed—the diagnosis—and the mix of grief, clarity, and hope that followed. Together, they describe their journey into AAC, how their initial hesitations transformed into encouragement, and how communication devices have opened new doors for Boston. Throughout the conversation, the Bruces emphasize the importance of trusting your instincts, meeting your child exactly where they are, and embracing each developmental step with patience and love. They explore the evolving relationship between their daughters, the role of therapeutic interventions balanced with natural family experiences, and the powerful impact of community support. Above all, this episode is a reminder that every family’s story is unique—and that the smallest steps often carry the biggest meaning. Subjects covered include: * Parenting through developmental delays and CVI * The emotional journey of receiving a diagnosis * Sleep challenges and early routines * Embracing AAC and communication devices * Celebrating small milestones and everyday victories * Navigating sibling dynamics with intention * Balancing therapy goals with real-life experiences * Advocacy, community support, and building a village * Hopes for communication, independence, and Boston’s future 🌐 Visit our website: mef2cast.com🛒 Check out our merch store: mef2cast.printify.me

Episode 39: Childhood Apraxia of Speech and IEP Advocacy | Jordan LeVan

In this episode of MEF2Cast, we sit down with Jordan LeVan to explore his powerful journey living with childhood apraxia of speech (CAS). Jordan shares what it was like growing up with a motor planning disorder that made verbal communication incredibly challenging, and how early struggles in diagnosis and therapy shaped his path forward. Through an honest and insightful conversation, Jordan breaks down the realities of speech therapy for children with CAS, emphasizing the importance of understanding motor planning and individualized approaches to communication. He also highlights how communication disorders can impact not just speech, but learning, confidence, and social-emotional development. A passionate advocate, Jordan dives into the critical role families play in navigating IEPs and special education systems. He shares practical strategies for parents, including understanding their legal rights, preparing for meetings, and ensuring their child receives appropriate services—whether through speech therapy or AAC tools. Jordan also discusses his advocacy work through the Apraxia Foundation and Fighting for My Voice, organizations dedicated to raising awareness and improving support for individuals with communication disorders. This episode is both empowering and informative for parents, educators, and anyone seeking to better understand the lived experience of CAS—and how advocacy can truly change lives. * Jordan’s personal experience with childhood apraxia of speech * Understanding CAS as a motor planning disorder * Challenges in speech therapy and effective approaches * The impact of communication disorders on education and emotional health * Navigating IEPs and special education advocacy * Legal rights under IDEA and FERPA * The role of AAC and alternative communication methods * Advocacy through the Apraxia Foundation and Fighting for My Voice * https://apraxiafoundation.org/ [https://apraxiafoundation.org/] * https://fightingformyvoice.com/ [https://fightingformyvoice.com/] * https://www.facebook.com/fightingformyvoice/ [https://www.facebook.com/fightingformyvoice/] 🌐 Visit our website: mef2cast.com 🛒 Check out our merch: mef2cast.printify.me 📩 Questions, comments, or interested in being a guest? Email us at: info@mef2cast.com 📘 Connect with us on Facebook: facebook.com/mef2cast 🧠 Subjects Covered:🌐 Resources:📩 Connect with MEF2Cast:

Episode 38: Finding the Path with Audra and Phil Kimmett

In this episode of MEF2Cast, we sit down with Audra and Phil Kimmett to talk about their journey raising their son William, who was diagnosed with MEF2C haploinsufficiency syndrome (MCHS). Through a candid and heartfelt conversation, Audra and Phil share the early signs that something in William’s development was different, the long road to diagnosis, and how they learned to navigate the complex world of therapies, specialists, and advocacy. The Kimmetts reflect on the importance of early intervention and the many therapies that can support children with MEF2C, while emphasizing that every child’s path is unique. They also discuss how connecting with other families through online support groups provided insights and emotional support that often go beyond what medical literature can offer. Beyond the day-to-day realities of caregiving, the conversation explores the long-term considerations families must face, including financial planning, legal preparation, and ensuring the best possible future for children with complex needs. With honesty and compassion, Audra and Phil highlight the physical and emotional demands of caregiving while reminding parents of the importance of taking care of themselves along the way. Subjects covered include: * Early signs of developmental differences and the path to diagnosis * Navigating medical systems and advocating for a child with MEF2C * Therapies and interventions that support developmental progress * The value of Facebook and online support communities for families * Understanding CVI and communication supports like AAC * The realities and physical demands of caregiving * Long-term planning, including financial and legal considerations * Why self-care for parents matters: “Put your oxygen mask on first” 🌐 Visit our website: mef2cast.com 🛒 Check out our merch store: mef2cast.printify.me 📩 Questions, comments, or interested in being a guest? Email us at: mef2cast@gmail.com [mef2cast@gmail.com] 📘 Connect with us on Facebook: https://www.facebook.com/profile.php?id=61572393046749 [https://www.facebook.com/profile.php?id=61572393046749]

Episode 37: Therapy, Parenthood, and Family with Julia Irwin

In this episode of the MEF2Cast, we sit down with Julia Irwin, mom to Elsie, to share their family’s journey with MEF2C haploinsufficiency syndrome. Julia reflects on Elsie’s early birth and low birth weight, the first signs that something more might be going on, and the long, often complicated road to diagnosis within the Canadian healthcare system. Our conversation explores what it means to finally have a name for what your child is experiencing—and the mix of relief, grief, and clarity that can come with a genetic diagnosis. Julia opens up about navigating therapies and adaptive strategies, building the right care team, and how tools like a service dog have supported Elsie’s safety, independence, and emotional regulation. We also talk candidly about the emotional landscape of parenting a child with complex needs: advocacy, sibling dynamics, educational decisions, sleep challenges, seizures, and the constant need to adapt as children grow. Julia’s story is a powerful reminder of resilience, authenticity, and the importance of community—while also acknowledging how overwhelming that community can sometimes feel. Subjects covered include: * Elsie’s early birth, low birth weight, and delayed milestones * Seizure onset and the path to genetic testing and diagnosis * Navigating healthcare systems and advocacy in Canada * The role of therapy and adaptive strategies in daily life * How a service dog supports safety, calm, and independence * Parenting challenges, emotional resilience, and long-term planning * Educational pathways and sibling relationships in special needs families 🌐 Visit our website: mef2cast.com 🛒 Check out our merch store: mef2cast.printify.me 📩 Questions, comments, or interested in being a guest? Email us at: mef2cast@gmail.com 📘 Connect with us on Facebook: https://www.facebook.com/profile.php?id=61572393046749 [https://www.facebook.com/profile.php?id=61572393046749] 📸 Follow us on Instagram: https://www.instagram.com/mef2cast/ [https://www.instagram.com/mef2cast/] 🎵 Follow us on TikTok: https://www.tiktok.com/@mef2cast [https://www.tiktok.com/@mef2cast]

Core Conversations: Dr Christopher Cowan

In this episode of our Core Conversations series, we explore the critical role of MEF2C, a transcription factor that shapes early brain development and influences a wide range of neurological functions. This conversation unpacks how MEF2C regulates gene expression, orchestrates neuronal pruning, and affects both excitatory and inhibitory neurons. We also dive into its connections with autism spectrum disorders, sleep regulation, motor coordination, and sensory processing. The discussion highlights ongoing research into therapeutic strategies—including the promise of gene therapy and viral delivery of MEF2C—and underscores the vital role families play in advancing this science. By understanding MEF2C’s multifaceted impact on the brain, researchers and families alike can work together to build the foundation for more effective treatments for conditions like MCHS. Subjects covered include: * Understanding MEF2C as a transcription factor in brain development * How MEF2C loss contributes to autism and related disorders * The balance between excitatory and inhibitory neurons * Why neuronal pruning is key to healthy brain function * Links between MEF2C and sensory, motor, and sleep regulation * The influence of microglia on brain health * Current therapeutic approaches, from gene therapy to viral delivery * Why family engagement is essential for moving research forward 🌐 Visit our website: mef2cast.com 🛒 Check out our merch store: mef2cast.printify.me 📩 Questions, comments, or interested in being a guest? Email us at: mef2cast@gmail.com 📘 Connect with us on Facebook: https://www.facebook.com/profile.php?id=61572393046749 [https://www.facebook.com/profile.php?id=61572393046749]