2018 World TSC Conference Videos

2018 World TSC Conference Videos

The TSC Alliance and TSC International are pleased to offer online videos from educational sessions recorded during the 2018 World TSC Conference, held July 25-29 in Dallas, TX. With almost 900 attendees from 26 countries and 41 states in the USA, the conference featured more than 80 expert speakers from around the world who presented the latest in TSC research, diagnosis, treatment, and management options through five general sessions and 28 track sessions.

For more details, you can download the official 2018 World TSC Conference Program Book.

To view the videos and read descriptions of the various educational tracks, simply choose a category below:

General Sessions

These sessions are of interest to anyone and cover the current status of TSC clinical consensus guidelines, TSC research, preventative clinical trials and CBD treatment, genetics and personalized medicine, and community advocacy.

Global Status of TSC and Consensus Guidelines for Diagnosis, Surveillance, and Treatment
Welcome: Kari Luther Rosbeck; Rebecca Anhang Price, PhD
Moderator: Chris Kingswood, MBBS, MRCP, FRCP
Speakers: Anna Jansen, MD, PhD; Darcy Krueger, MD, PhD; Hope Northrup, MD

Research 101: The Path to New Drugs for TSC
Moderator: Steve Roberds, PhD
Family Speaker: Laura Cervantes
Speakers: Elizabeth Henske, MD; Kimberly Moran, PhD; David Schenkein, MD; Michael Wong, MD, PhD

Preventative Trials and Cannabidiol (CBD) Treatment for TSC
Moderator: Mustafa Sahin, MD, PhD
Family Speaker: Shelly Meitzler ́
Speakers: Martina Bebin, MD, MPA; Sergiusz Józwiak, MD, PhD; Chris Kingswood, MBBS, MRCP, FRCP; Elizabeth Thiele, MD, PhD

Genetics, Biosamples, Natural History Data and Potential for Personalized Medicine
Moderator: Julian Sampson, DM, FRCP, FMedSci
Family Speaker: Robert Moss
Speakers: Peter Crino, MD, PhD; Chris Kingswood, MBBS, MRCP, FRCP; Steve Sparagana, MD

The Power of Community Advocacy and The Inspirational Story of Eric Schmitt
Moderator: Mark Vieth
Family Speaker: Debora Moritz
Speaker: Eric Schmitt, JD
Closing Remarks: Kari Luther Rosbeck


Track A: Pediatrics

These sessions specifically address questions of parents with children, including seizure types and treatments; SEGA and treatment options; epilepsy surgery and imaging; autism spectrum disorder, biomarkers, therapeutic options and clinical trials; accessing early childhood services and navigating the education system; genetics; and ADHD and behavioral challenges with hands-on practical approaches.

Please note: TAND stands for TSC-Associated Neuropsychiatric Disorders.

Seizure Types and Treatments for Infants and Children with TSC
Moderator: James Riviello, Jr., MD
Speakers: Brenda Porter, MD, PhD; Michal Tzadok, MD; Michael Wong, MD, PhD

SEGA and Treatment Options
Moderator: Howard Weiner, MD, FACS, FAAP
Speakers: Daniel Curry, MD; Ian Miller, MD; Jonathan Roth, MD

Epilepsy Surgery and New Breakthroughs in Imaging
Moderator: Daniel Curry, MD
Speakers: Aria Fallah, MD; Jonathan Roth, MD; Howard Weiner, MD, FACS, FAAP

TAND: Autism Spectrum Disorder, Biomarkers, Therapeutic Options and Clinical Trials (for all ages)
Moderator: Anna Byars, PhD
Speakers: Shafali Jeste, MD; Mustafa Sahin, MD, PhD; Petrus de Vries, MBChB, MRCPsych, PhD

Genetics Made Simple 
Moderator: Tamison Jewett, MD
Speakers: Hope Northrup, MD; Julian Sampson, DM, FRCP, FMedSci

Accessing Early Childhood Services and Navigating the Education System
Moderator: Carla Fladrowski
Speakers: Jennifer Flinn, EdD; Dena Hook

TAND: ADHD and Behavioral Challenges in Children with TSC
Moderator: Tanjala Gipson, MD
Speakers: Anna Byars, PhD; Anna Jansen, MD, PhD

Track B: Transition

This track focuses on issues important to parents of children transitioning into adulthood with sessions on TSC through the development spectrum, advocacy in the education system for transition planning, long-term care, guardianship, residential options, vocational training or college preparation and work options; aggressive behavioral management; and kidney issues in young adults.

Please note: TAND stands for TSC-Associated Neuropsychiatric Disorders.

Managing Medical Transitions from Childhood to Adulthood
Moderator: Luciana Haddad, MD, PhD
Speakers: Peter Crino, MD, PhD; Philippe Major, MD; Elizabeth Thiele, MD, PhD

Advocacy in the Education System for Transition into Adulthood
Moderator: Dena Hook
Speakers: Jennifer Flinn, EdD; Dena Hook

Long-Term Care Planning: Special Needs Trusts and Guardianship
Moderator: Dena Hook
Panelists: Deanna M. Eble, Esq.; Kelly Piacenti, MA; Theresa Varnet, MSW, JD

Transition into Adulthood: Respite Care and Residential Options
Moderator: Cathy Evanochko
Speakers: Deanna M. Eble, Esq.; Yolande Erickson, JD, Esq.

Transition into Adulthood: Employment and Higher Education
Moderator: Dena Hook
Speakers: Jake Irby, Bertha Sanchez Hayden

TAND: Aggressive Behavior Management
Moderator: Shafali Jeste, MD
Speakers: Anna Byars, PhD; Tanjala Gipson, MD

Kidney Issues in Children and Young Adults with TSC
Moderator: John Bissler, MD
Speakers: David Ewalt, MD; Joshua Samuels, MD, MP

Track C: Adults

The conference devoted an entire track to concerns faced by adults living with TSC as they make care decisions for themselves and their families. These sessions touch on management of TSC as an adult, kidney issues and treatment options, LAM treatment options and clinical trials, seizure management in adults with TSC, genetics and reproductive issues, and mental health issues.

Please note: TAND stands for TSC-Associated Neuropsychiatric Disorders.

Kidney Issues and Treatment Options
Moderator: David Ewalt, MD
Speakers: John Bissler, MD; John Hulbert, MD; Chris Kingswood, MBBS, MRCP, FRCP

LAM: Treatment Options and Clinical Trials
Moderator: Joel Moss, MD, PhD
Speakers: Elizabeth Henske, MD; Frank McCormack, MD; Susan Sherman, MHA

Seizure Management and Impact on Quality of Life
Moderator: Michael Frost, MD
Speakers: Peter Crino, MD, PhD; Jennifer Waldron

Genetics, Reproductive Issues and Impact on Relationships
Moderator: Luciana A. Haddad, MD, PhD
Speakers: Tamison Jewett, MD; Hope Northrup, MD
Panelists: Seth Fritts, MSW; Rob and Shannon Grandia; Matt and Shelly Meitzler; Karina Stormfeldt Hjarsen

TAND: Mental Health Issues in Living with TSC as an Adult
Moderator: Seth Fritts, MSW
Speaker: Petrus de Vries, MBChB, MRCPsych, PhD

Navigating the Complexities for Special Needs Care in TSC (Insurance, SSI, Waivers, Medicaid, Access)
Moderator: Theresa Varnet, MSW, JD
Speaker: Yolande Erickson, JD, Esq.
Panelists: Rachael Jackson; Tammy Kouns; Julie Rogers, LCSW

Organizing Your Thoughts and Emotions (Executive Functioning)
Moderator: Petrus de Vries, MBChB, MRCPsych, PhD
Panelists: TSC Alliance Adult Regional Coordinators

Track D: Special Issues

This track includes specialty issues such as navigating the conference as a newly diagnosed individual or family; sleep disorders in TSC; preparing your family for epilepsy surgical evaluation and surgery; other manifestations of TSC; skin involvement; occupational therapy, physical therapy and non-medical therapies; and microboards.

Please note: TAND stands for TSC-Associated Neuropsychiatric Disorders.

TAND Workshop
Speaker: Tanjala Gipson, MD

Other Manifestations: Bone, Liver, Ovarian, Pancreas, Teeth, Spine, and Heart
Moderator: Finbar O’Callaghan, MA, MB, ChB, MSc, PhD, FRCPCH, FRCP
Speaker: Steve Sparagana, MD
Panelists: Elizabeth Gosnell, DMD, MS; Brian Grottkau, MD

TAND: Sleep Disorders in TSC
Moderator: Anna Jansen, MD, PhD
Speakers: Deborah Briggs, MD; Shafali Jeste, MD; Jonathan Lipton, MD, PhD

Skin Involvement and Treatment Options
Moderator: Mary Kay Koenig, MD
Speakers: Tom Darling, MD, PhD; Joyce Teng, MD, PhD

Preparing Your Family for Epilepsy Surgical Evaluation and Surgery
Moderator: Michael Frost, MD
Panelists: Patricia Gibson, MSSW, DHL, ACSW; Carol Hoskin, RN; Robert and Lisa Moss; Sean and Lauren Shillinger

Occupational Therapy, Physical Therapy, and Non-Medical Therapies (Equine, Music, etc.)
Moderator: Patricia Gibson, MSSW, DHL, ACSW
Panelists: Reiko Donato, Debora Moritz, Chris and Leslie Russell

What’s Next? Tools to Empower You on Your Medical Journey to an Adult Neurologist
Moderator: Stephanie Mucha, MPH
Speaker: Rebecca Schultz, PhD, RN, CPNP

Moderator: Dena Hook
Speaker: Cheryl Dinnell

En español

Reunión educativa en español
Facilitador: Ary Agami
Oradores y líderes del evento: Darcy Krueger, MD, PhD; Joao García Martinez, MD; Zacil-Ha Vilchis Zapata, MD, MsC