All Resources

New Treatments – How Much Longer?

After months – maybe even years – of feeling like a hamster on its exercise wheel chasing a solution to...

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PCDH19 Genetics 3: X-Chromosome Inactivation & Mosaicism

Learn more about the X-chromosome inactivation and Mosaicism related to PCDH19. This is the third in an ongoing series of...

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PCDH19 Genetics 2: Inheritance

Learn more about the inheritance of genes related to PCDH19. This is the second in an ongoing series of instructional...

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PCDH19 Genetics 1: Understanding Genes & Chromosomes

Learn more about the genes and chromosomes related to PCDH19. This is the first in an ongoing series of instructional...

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Le Shepherd, LPC-Supervisor: Grief & Trauma Among Parents of Kids with PCDH19 Epilepsy

Learn more about grief and trauma among parents of children with PCDH19 epilepsy, presented by Le Shepherd, LPC-Supervisor, at the...

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Keena Melville, PhD: A Sensory-Based Approach to Reading Comprehension for Neurodivergent Folks

Learn more about the sensory-based approach to reading comprehension for neurodivergent individuals, presented by Keena Melville, PhD, at the PCDH19...

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Stephanie Gandomi, MS, MBA, LCGC: Integrative Health Genomics: A Critical Shift Toward Whole-Person Healthcare

Learn more about the role of genetics in PCDH19-related disorders in this session with Stephanie Gandomi, MS, MBA, LCG. She...

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Kelly Weatherwax, MS, SLP-CCC: Neurodiversity Affirming Practices

Learn more about neurodiversity-affirming practices in speech therapy with Kelly Weatherwax, MS, CCC-SLP, from The Helix School in Marin. In...

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Lacy Smith, MS, CGC & Nilika Singhal, MD: PCDH19 Registry: Looking Back on Ten Years

Learn more about the PCDH19 Patient Registry in this session led by Dr. Nilika Singhal (UCSF Benioff Children’s Hospital) and...

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Dr. Francesco Dellepiane: In vivo evaluation of structural and connectivity changes in patients with PCDH19 via novel diffusion MRI models

Learn more about the cutting-edge brain imaging research presented by Dr. Francesco Dellepiane, a pediatric neuroradiologist at Bambino Gesù Hospital...

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Prof. Paul Thomas PhD: Investigating Molecular Mechanisms Underlying PCDH19 Clustering Epilepsy

Learn more about Dr. Charles Nelson’s research on how early life adversity affects brain development, behavior, and cognition. His work...

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Julie Ziobro, MD / PhD: Examining Inhibitory Interneurons in PCDH19-Clustering Epilepsy

Learn more about cutting-edge research from Dr. Julie Zdeb-Rutter at the University of Michigan, exploring how inhibitory interneurons and disrupted...

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