2022 World TSC Conference Videos

2022 World TSC Conference Videos

The TSC Alliance and TSC International are pleased to offer online videos from educational sessions recorded during the 2022 World TSC Conference, held July 28-31, 2022, in Dallas, TX. With almost 1,000 attendees from 23 countries, the conference featured more than 100 expert speakers from around the world who presented the latest in TSC research, diagnosis, treatment, and management options through three general sessions and 35 sessions along 5 learning paths.

Recordings made possible by a Visionary Technology Sponsorship from Drs. Bonnie and Jonathan Rothberg and family.

For more details, you can download the official 2022 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, global collaborative research (including TANDem), the TSC Alliance research model and the role of the TSC community in driving research forward. There are also two expert panel Q&A sessions held during the first two days of the conference.

Global Collaborations (TANDem) and Updated Consensus Guidelines

Welcome: Peter B. Crino, MD, PhD, Chair, TSC Alliance Board of Directors
Moderator: Pradnya Gadgil, MBBS, MRCPCH
Family Speaker: Eva Schoeters
Speakers: Petrus de Vries, MBChB, FRCPsych, PhD; Hope Northrup, MD

TSC Community Driven Research Network (TSC Alliance Research Model)

Moderator: Martina Bebin, MD, MPA
Family Speaker: Latrice Hamilton
Speakers: Dean Aguiar, PhD; Sara Chieffo; Zoë Fuchs; Steve Roberds, PhD; Gabrielle Rushing, PhD


Driving the Future of TSC – Clinical Trials and Clinical Care

Moderator: Anna Jansen, MD, PhD
Family Speakers: Dave and Rachel Johnson
Speakers: Martina Bebin, MD, MPA; Darcy Krueger, MD, PhD; Joel Moss, MD, PhD; Mustafa Sahin, MD, PhD
Closing Remarks: Kari Luther Rosbeck

General Q&A: Panel of Day 1 Presenters

Moderator: Kari Luther Rosbeck
Panelists: Nathan Call, PhD, BCBA-D; Peter Crino, MD, PhD; Dan Curry, MD; Tanjala Gipson, MD; Nishant Gupta, MD; Chris Kingswood, MD; Hope Northrup, MD; Joshua Samuels, MD, MPH; Joyce Teng, MD, PhD; Howard Weiner, MD; Jim Wheless, MD

General Q&A: Panel of Day 2 Presenters

Moderator: Steve Roberds, PhD
Panelists: Derek Bauer, MD; John Bissler, MD; Petrus de Vries, MBChB, FRCPsych, PhD; David Dunn, MD; Erin Fonseca, RN; Gerald Grant, MD; Lisa Henske, MD; Shafali Jeste, MD; Darcy Krueger, MD, PhD; Angela Peron, MD

Large Group Lectures

Large group lectures feature 3-4 speakers with a moderator and include formal presentations on topics that impact individuals across the lifespan with some time at the end for Q&A. 

Seizure Types and Treatments 

Moderator: Rohini Coorg, MD
Speakers: Mark Keezer, MDCM, PhD; Elizabeth Thiele, MD, PhD; Jim Wheless, MD; Erin Fonseca, RN 

Skin and Dental Manifestations and Treatment Options 

Moderator: Klaus Werner, MD, PhD
Speakers: Elizabeth Gosnell, DMD, MS; Joyce Teng, MD, PhD 

Genetics Made Simple 

Moderator: Steven Sparagana, MD
Speakers: Jennifer Glass, MS, CGC, LGC; Hope Northrup, MD; Zacil-Ha Vilchis Zapata, MD 

Kidney Tumors, Cysts & Treatment Options 

Moderator: Chris Kingswood, MD
Speakers: John Bissler, MD; Oded Volovelsky, MD, PhD

Access to TSC Clinical Care

Moderator: Steve Roach, MD
Panelists: Carla Fladrowski; Pradnya Gadgil, MBBS, MRCPCH; Joao García Martínez, MD; Darcy Krueger, MD, PhD; Micaela Rozenberg; Oded Volovelsky, MD, PhD 

Gene Therapy – Hopes and Hurdles 

Moderator: Michael Wong, MD, PhD
Speakers: Julian Martinez-Agosto, MD; Mustafa Sahin, MD, PhD; Kristi Viles, PhD 

TAND – Behavioral Interventions and Overview of Medications 

Moderator: Billy Holcombe, PhD
Speakers: Petrus de Vries, MBChB, FRCPsych, PhD; David Dunn, MD; Tanjala Gipson, MD; Shafali Jeste, MD 

Panel Presentations

Panel presentations feature 3-4 speakers with a moderator who will ask questions to engage interactive conversations amongst the panel and the attendees. 

Navigating the Complexities for Special Needs Care in TSC (SSI, Waivers, Medicaid, Access, Financial Planning and Guardianship) 

Moderator: Lisa Szilagyi
Panelists: John Hulbert, MD; Kelly Piacenti; Nadia Vann, JD 

Surgical Approaches and Assessments for Epilepsy and SEGA 

Moderator: Dan Curry, MD
Panelists: Jeffrey Blount, MD; Asim Choudhri, MD; Gerald Grant, MD; Howard Weiner, MD 

Accessing Early Childhood Services and Non-Medical Therapies 

Moderator: Rohini Coorg, MD
Panelists: Joanna Lomas-Mevers, PhD, BCBA; Shelly Meitzler, Ashley Pounders, MSN, FNP-C; Kimberly Street, LMSW, LPN, CCM 

TAND ADHD, Anxiety, Autism (Research)  

Moderator: Mustafa Sahin, MD, PhD
Panelists: Nathan Call, PhD, BCBA-D; Jamie Capal, MD; Anna Jansen, MD, PhD; Shafali Jeste, MD; Melyssa McDonough, MS, BCBA 

Genetics, Reproductive Issues and Impact on Relationships 

Moderator: Joshua Samuels, MD, MPH
Panelists: Lara Friel, MD, PhD; Jennifer Glass, MS, CGC, LGC; Angela Peron, MD 

Finding Your Way Home – Creative Housing Options / Microboards 

Moderator: Kelly Piacenti
Panelists: Deanna Eble, Esq.; John Hulbert, MD; Lisa Szilagyi 

Other Organ Manifestations – Liver, Pancreas, Heart and Eyes 

Moderator: Rajsekar Rajaraman, MD
Panelists: Mary Aronow, MD; Darcy Krueger, MD, PhD; David Rodriguez-Buritica, MD

Specialty Topics

Specialty topic lectures feature at least 2+ speakers with a moderator and focus on specialty topics that affect the TSC community. 

Using Technology to Your Advantage: Seizure Monitoring, Empowering Communication for the Nonverbal and Futuristic Medical Care

Moderator: M. Scott Perry, MD
Speakers: Debora Moritz, Rob Moss, Rahul Vipparthi

Accessing Managed and Palliative Care Throughout Your TSC Journey

Moderator: Ashley Pounders, MSN, FNP-C
Speakers: Sarah Friebert, MD; Nishant Gupta, MD; Joshua Samuels, MD, MPH 

LAM, Treatment Options and Clinical Trials

Moderator: Susan Sherman, MHA 
Speakers: Nishant Gupta, MD; Lisa Henske, MD; Joel Moss, MD, PhD

Caregiver Resources – Self and Respite Care

Moderator: Debora Moritz 
Speakers: Petrus de Vries, MBChB, FRCPsych, PhD; Kelly Piacenti; Karina Stormfeldt Helboe; Kimberly Street, LMSW, LPN, CCM 

Refractory Epilepsy – Now What?

Moderator: Jim Wheless, MD
Speakers: Peter Crino, MD, PhD; Sergiusz Jóźwiak, MD, PhD; Michael Wong, MD, PhD 

Managing Progressive Kidney Disease

Moderator: John Bissler, MD
Speakers: Chris Kingswood, MD; Joshua Samuels, MD, MPH

Transition into Adulthood – Employment and Higher Education

Moderator: Jonathan Goldstein
Speakers: Deanna Eble, Esq.; Preston Fitzgerald; Celie Johnson; Kirk McCreary; Emily Racenet