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 Syys 202536min
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 Elo 20251h 28min
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 Elo 20251h 45min
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 Elo 20251h 8min
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 Elo 20251h 8min
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 Heinä 20251h 11min
Episode 16: Therapy, Advocacy, and Family with Camila and Jedidiah
In today’s episode, we are joined by Camila and Jedidiah Seaman, parents to Margo. Camila and Jedidiah join us to discuss Margo’s story, the lessons learned along the way, and their hopes for the futu...
18 Heinä 20251h 31min
Episode 15: MEF2C and the Immune System with Dr Tim O'Sullivan
In today’s episode, we are joined by Dr. Tim O’Sullivan, a immunologist at UCLA, as well as his graduate student Cassidy Lee. Dr. O’Sullivan and Cassidy join us to discuss the emerging research on MEF...
11 Heinä 202537min
