Jean Baptiste LePichon, MD, PhD

I am a board-certified pediatric neurologist and epileptologist at Children’s Mercy Kansas City (CMKC). I completed an MD, PhD at Baylor College of Medicine and a residency at Texas Children’s Hospital. I am the titular of the Madison Lauren Sargent Endowed Professorship in Neurology/Angelman Syndrome. We opened the Angelman Syndrome (AS) Clinic at Children’s Mercy in December 2023. Over the last year and a half our clinic has steadily grown. We have now enrolled over 80 families. We designed our clinic to achieve two purposes: First, to be a medical home for children and youth with AS. A medical home is a place where patients and their families are known and treated as a whole person. This means that we try and address all the issues that come with dealing with AS, including psychosocial and medical issues. By design the clinic is small and intimate. The relationships formed in that clinic are intended to be the basis of a long-term partnership. The second important function of the clinic is to develop research for patients with AS. We have launched several research projects, including an organoid cell line project that is designed to personalize the care of every patient and a genomic testing tool that we hope will be the basis of a newborn screen for AS. In addition to my work on AS, I am also the co-PI on a $2.16 M, 5 year, HRSA study, Awareness and Access to Care for Children and Youth with Epilepsy, designed to develop medical homes for children and youth with epilepsy living in underserved rural areas of Kansas. This work has been the basis on which we have built the medical home model for the AS Clinic. I look forward to meeting all of you at the Annual ASF meeting this Summer!