MEF2Cast

MEF2Cast

Haley and Eli, parents of a child with MEF2C Haploinsufficiency Syndrome (MCHS), speak to both other parents and scientific experts to educate, support, and build community around MCHS

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Episoder(48)

Episode 24: Autism and Movement with Sheena Leedham

Episode 24: Autism and Movement with Sheena Leedham

Episode 24: Autism and Movement with Sheena LeedhamIn this episode, we sit down with Sheena Leedham, an educator and trainer whose work highlights the power of movement in the autism community. Sheena...

19 Sep 202552min

Episode 23: Finding Joy In Everyday Moments with Blake Kelly

Episode 23: Finding Joy In Everyday Moments with Blake Kelly

In this episode of the MEF2Cast, Blake Kelly shares her personal journey of raising her son Oscar, who has MCHS. She discusses the challenges of navigating healthcare in Amsterdam compared to the U.S....

11 Sep 20251h 13min

Episode 22: The Volāre Study — Community, Data, and Hope with Dr. Zachary Grinspan

Episode 22: The Volāre Study — Community, Data, and Hope with Dr. Zachary Grinspan

In this episode, we sit down with Dr. Zachary Grinspan, a pediatric neurologist whose work focuses on MEF2C haploinsufficiency syndrome (MCHS). Dr. Grinspan leads the Volāre study, a groundbreaking ef...

5 Sep 202536min

Episode 21: Personal Journeys, Professional Breakthroughs with Kristina Johnson

Episode 21: Personal Journeys, Professional Breakthroughs with Kristina Johnson

In this episode, we sit down with Kristina Johnson, a professor at Northeastern University and mother to her son Felix, who was diagnosed with MEF2C haploinsufficiency syndrome at just nine months old...

29 Aug 20251h 28min

Episode 20: Coping, Growing, and Thriving with Jennifer and Keith Aguirre

Episode 20: Coping, Growing, and Thriving with Jennifer and Keith Aguirre

In this episode, we sit down with Jennifer and Kieth Aguirre, parents to their daughter Maddie, who has MEF2C haploinsufficiency syndrome. The Aguirres share their family’s journey — from the long roa...

22 Aug 20251h 45min

Episode 19: MEF2C – From Research to Real Life with Dr. Steve Skinner and Dr. Jessica Cooley-Coleman

Episode 19: MEF2C – From Research to Real Life with Dr. Steve Skinner and Dr. Jessica Cooley-Coleman

In this episode, we sit down with Dr. Steve Skinner, CEO of Greenwood Genetic Center (GGC), and Jessica Cooley-Coleman, a genetic counselor at GGC, to explore the complexities of MEF2C haploinsufficie...

15 Aug 20251h 8min

Episode 18: Hope in Every Step with Nicki and Kyle

Episode 18: Hope in Every Step with Nicki and Kyle

🎙️ In today’s episode, we’re joined by the Bouvier family as they share their heartfelt journey with their daughter, Taylor, who has Mef2C Haploinsufficiency Syndrome (MCHS).Together, we discuss the ...

8 Aug 20251h 8min

Episode 17: Interdisciplinary Approaches to Therapy with Lauren, Kaycee, and Tyler

Episode 17: Interdisciplinary Approaches to Therapy with Lauren, Kaycee, and Tyler

In today’s episode, we are joined by Lauren, Kacee, and Tyler, a dedicated team of therapists working with Margo, a young girl with MCHS. They join us to discuss the interdisciplinary approach in pedi...

24 Jul 20251h 11min

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