PCDH19 Alliance Conferences

Previous Alliance Conferences

The PCDH19 Professional and Family Conference is a biennial international event focused on bringing together the leading researchers and clinicians to present the latest information, discoveries and treatment protocols. Families from all over the world attend to learn the latest and to bond with other PCDH19 families.

2024 Conference Videos

(chronological order - left to right)

08:39

PCDH19 Alliance 2024 Conference Introduction & Kickoff: Dr. Joseph Sullivan, and Julie Walters

PCDH19 Alliance 2024 Research and Family Conference - Introduction & Kickoff: Dr. Joseph Sullivan MD, and Julie Walters, President & Co-founder PCDH19 Alliance

59:32

Hisashi Umemori, MD, PhD: Mismatch in PCDH19-Related Disorder

PCDH19 Alliance 2024 Research and Family Conference - Hisashi Umemori, MD, PhD: Mismatch in PCDH19-Related Disorder

46:49

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

PCDH19 Alliance 2024 Research and Family Conference - Julie Ziobro, MD / PhD: Examining Inhibitory Interneurons in PCDH19-Clustering Epilepsy

01:02:02

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

PCDH19 Alliance 2024 Research and Family Conference Day 1 - Prof. Paul Thomas PhD: Investigating Molecular Mechanisms Underlying PCDH19 Clustering Epilepsy

21:48

Dr. Francesco Dellepiane: In vivo evaluation of structural and connectivity changes in patients...

PCDH19 Alliance 2024 Research and Family Conference - Dr. Francesco Dellepiane: In vivo evaluation of structural and connectivity changes in patients with PCDH19 via novel diffusion MRI models

52:37

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

PCDH19 Alliance 2024 Research and Family Conference - Lacy Smith, MS, CGC & Nilika Singhal, MD: PCDH19 Registry: Looking Back on Ten Years

51:46

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

PCDH19 Alliance 2024 Research and Family Conference - Kelly Weatherwax, MS, SLP-CCC: Neurodiversity Affirming Practices

01:22:20

Stephanie Gandomi, MS, MBA, LCGC: Integrative Health Genomics: A Critical Shift Toward...

PCDH19 Alliance 2024 Research and Family Conference - Stephanie Gandomi, MS, MBA, LCGC: Integrative Health Genomics: A Critical Shift Toward Whole-Person Healthcare

02:00:48

PCDH19 Epilepsy Town Hall 2021 - Spanish Subtitles

PCDH19 Virtual Town Hall - April 10, 2021 This video is available with English, Spanish, & Polish subtitles (accessible through PCDH19 Alliance page). The Alliance extends our gratitude and thanks to our Chair, Dr. Joseph Sullivan, and our Panel who participated in the PCDH19 Alliance Town Hall (in alphabetical order): Alex Aimetti PhD (Marinus), Jozef Gécz, PhD, Sharyl Fyffe-Maricich PhD (Ultragenyx), Dr. Ann Poduri, & Paul Thomas PhD.

02:00:48

PCDH19 Epilepsy Town Hall 2021 - English Subtitles

PCDH19 Virtual Town Hall - April 10, 2021 This video is available with English, Spanish, & Polish subtitles (accessible through PCDH19 Alliance page). The Alliance extends our gratitude and thanks to our Chair, Dr. Joseph Sullivan, and our Panel who participated in the PCDH19 Alliance Town Hall (in alphabetical order): Alex Aimetti PhD (Marinus), Jozef Gécz, PhD, Sharyl Fyffe-Maricich PhD (Ultragenyx), Dr. Ann Poduri, & Paul Thomas PhD.

02:00:48

PCDH19 Epilepsy Town Hall 2021 - Polish Subtitles

PCDH19 Virtual Town Hall - April 10, 2021 This video is available with English, Spanish, & Polish subtitles (accessible through PCDH19 Alliance page). The Alliance extends our gratitude and thanks to our Chair, Dr. Joseph Sullivan, and our Panel who participated in the PCDH19 Alliance Town Hall (in alphabetical order): Alex Aimetti PhD (Marinus), Jozef Gécz, PhD, Sharyl Fyffe-Maricich PhD (Ultragenyx), Dr. Ann Poduri, & Paul Thomas PhD.

2021 Virtual Townhall

2018 Conference Videos

15:45

2018 PCDH19 Epilepsy Professional and Family Symposium - Award Ceremony

2018 PCDH19 Epilepsy Professional and Family Symposium Presented by the PCDH19 Alliance and the Department of Neurology UCSF School of Medicine

29:05

PCDH19 Registry Update: Enrollment, findings and Future Directions

2018 PCDH19 Epilepsy Professional and Family Symposium PCDH19 Registry Update: Enrollment, findings and Future Directions Lacey Smith, MS, CGC Boston Children's Hospital Boston, Massachusetts Presented by the PCDH19 Alliance and the Department of Neurology UCSF San Francisco School of Medicine.

47:21

Further Characterization of The PCDH19-KO Mouse Model

2018 PCDH19 Epilepsy Professional and Family Symposium Further Characterization of The PCDH19-KO Mouse Model And Initial Data On The Proteolytic Processing of The Protein Dr. Isabel Martinez-Garay Cardiff University, UK Presented by the PCDH19 Alliance and the Department of Neurology UCSF San Francisco School of Medicine.

44:17

How do PCDH19 Mutations Affect Brain Development?

2018 PCDH19 Epilepsy Professional and Family Symposium How do PCDH19 Mutations Affect Brain Development? Insights from Mouse Models Paul Thomas, PhD The University of Adelaide at the Women's and Children's Hospital Adelaide, Australia Presented by the PCDH19 Alliance and the Department of Neurology UCSF San Francisco School of Medicine.

46:26

Mechanisms and Models of PCDH19 Female Limited Epilepsy

2018 PCDH19 Epilepsy Professional and Family Symposium Mechanisms and Models of PCDH19 Female Limited Epilepsy Wei Niu Research Investigator, Neurology University of Michigan Health System Ann Arbor, Michigan Presented by the PCDH19 Alliance and the Department of Neurology UCSF School of Medicine

46:49

Disruption of The Excitation/Inhibition Equilibrium in The Conditional PCDH19 Mouse

2018 PCDH19 Epilepsy Professional and Family Symposium Disruption of The Excitation/Inhibition Equilibrium in The Conditional PCDH19 Mouse: Insights From in Vivo Electrophysiology Dr. Gian Michele Ratto Istituto Nanoscienze CNR and Scuola Normale Pisa, Italy Presented by the PCDH19 Alliance and the Department of Neurology UCSF School of Medicine

37:15

Developing Human Cellular Models of Neurodevelopmental Disorders

2018 PCDH19 Epilepsy Professional and Family Symposium Developing Human Cellular Models of Neurodevelopmental Disorders Jimena Anderson Postdoctoral Fellow Stanford University Presented by the PCDH19 Alliance and the Department of Neurology UCSF School of Medicine

51:39

Separating Wheat from Chaff in PCDH19 GCE

2018 PCDH19 Epilepsy Professional and Family Symposium Separating Wheat from Chaff in PCDH19 GCE Jozef Gecz, RNDr, PhD The University of Adelaide at the Women's and Children's Hospital Adelaide, Australia Presented by the PCDH19 Alliance and the Department of Neurology UCSF San Francisco School of Medicine.

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PCDH19 Alliance Conferences

Previous Alliance Conferences

2024 Conference Videos

(chronological order - left to right)

PCDH19 Alliance 2024 Conference Introduction & Kickoff: Dr. Joseph Sullivan, and Julie Walters

Hisashi Umemori, MD, PhD: Mismatch in PCDH19-Related Disorder

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

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

Dr. Francesco Dellepiane: In vivo evaluation of structural and connectivity changes in patients...

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

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

Stephanie Gandomi, MS, MBA, LCGC: Integrative Health Genomics: A Critical Shift Toward...

PCDH19 Epilepsy Town Hall 2021 - Spanish Subtitles

PCDH19 Epilepsy Town Hall 2021 - English Subtitles

PCDH19 Epilepsy Town Hall 2021 - Polish Subtitles

2021 Virtual Townhall

2018 Conference Videos

2018 PCDH19 Epilepsy Professional and Family Symposium - Award Ceremony

PCDH19 Registry Update: Enrollment, findings and Future Directions

Further Characterization of The PCDH19-KO Mouse Model

How do PCDH19 Mutations Affect Brain Development?

Mechanisms and Models of PCDH19 Female Limited Epilepsy

Disruption of The Excitation/Inhibition Equilibrium in The Conditional PCDH19 Mouse

Developing Human Cellular Models of Neurodevelopmental Disorders

Separating Wheat from Chaff in PCDH19 GCE

2018 Conference Photos

2016 Conference Photos

2016 Conference Photos