MEF2Cast
Haley and Eli, parents of a child with MEF2C Haploinsufficiency Syndrome (MCHS), speak to both other parents and scientific experts to inform, support, and build community around MCHS
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Sept. 11, 2025
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., the emotional rollercoa...
Sept. 5, 2025
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 effort to map the natural ...
Aug. 29, 2025
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. Kristina shares her fam...
Aug. 22, 2025
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 road to diagnosis, to reloc...
Aug. 15, 2025
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 haploinsufficiency syndrome. Together,...
Aug. 8, 2025
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 emotional and practical r...