Conference Videos and Slideshows
2016 Vancouver TSC Educational Conference
September 16th and 17th, 2016
TAND across the lifespan – Dr. Petrus de Vries – Video
Day 2 Introduction – Dr. Mary Connolly and Cathy Evanochko – Video
Potential for Prevention of Epilepsy in TSC – Dr. Mary Connolly – Video
Epilepsy Management in Tuberous Sclerosis Complex – Dr. Mary Connolly – Video
Dietary Therapy of Epilepsy – Dr. Elizabeth Thiele – Video
Behavior, Epilepsy, and Anti-Seizure Medications in Children with TSC – Dr. Bláthnaid McCoy – Video
TSC: Behavioral Challenges in Childhood – Dr. Elizabeth Thiele – Video
TSC Across the Lifespan: Transition from Pediatric to Adult Services
- Beginning of Life Through Elementary School – Dr. Elizabeth Thiele – Video
- Teen Years – Dr. Mary Connolly – Video
- Adults with TSC: Transitions and Conditions – Dr. Peter Crino – Video
Katrina Evanochko – Community Speaker – TSC and the Sibling Perspective – Video
Skin Manifestations of Tuberous Sclerosis Complex – Power Point Presentation
TSC: Emerging Management of Renal Manifestations – Dr. John Hulbert – Video
Pulmonary Manifestations of Tuberous Sclerosis – Dr. Nasreen Khalil – Video
Conference Conclusion – Cathy Evanochko – Video
New Therapies, New Hope Patient and Caregiver meeting
November 8, 2015
My Child has a SEGA (s) – Dr. Ute Bartels Power Point presentation
Epilepsy Trials and Treatment – Mac Burnham Power Point presentation
New Hope for Management of TSC – Dr. Kapoor Power Point presentation
2014 World TSC Conference
July 3-6, 2015. Washington DC
All videos posted © of the Tuberous Sclerosis Alliance and used with permission 2015. All rights reserved.
General Session
TSC Clinical Consensus Conference: Updates on International Gold Standards in Diagnosis, Testing and Treatment, and Practical Guide for Sharing These with Your Healthcare Providers
Community Introduction: Keith Hall
Moderator: Mary Connolly, MB,BCh, FRCPC, FRCP(I), FRCP(Ed)
Speakers: Hope Northrup, MD; Darcy Krueger, MD, PhD
Taking an Active Role in Research: TSC Natural History Database, Biomarkers, Clinical Trials
Community Introduction: Debora Moritz
Moderator: Kari Luther Rosbeck, President and CEO, TS Alliance
Speakers: Steven Sparagana, MD; Mustafa Sahin, MD, PhD; Mary Kay Koenig, MD
Emerging Treatments: mTOR Inhibitors and Beyond
Community Introduction: Julie Blum
Moderator: Steven Roberds, PhD, Chief Scientific Officer, TS Alliance
Speakers: David Neal Franz, MD; Elizabeth Henske, MD; Michael Wong, MD, PhD
TSC Community Impact on Advocating for Resources for TSC Research
Community Introduction: April Cooper
Moderator: Matt Bolger
Speaker: Mark Vieth
Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative and Next Steps in Personalized Medicine
Community Introductions: Laurisa and Dan Ballew; Brooke Simsa
Moderator: Steven Roberds, PhD, Chief Scientific Officer, TS Alliance
Speakers: Jeffrey MacKeigan, PhD; Gregory Farber, PhD
Track A: Pediatrics
Epilepsy Surgery and Imaging
Moderator: Wenbo Zhang, MD, PhD
Speakers: Harry Chugani, MD; Gary Mathern, MD; Jonathan Roth, MD
SEGA and Treatment Options
Moderator: Sergiusz Jóźwiak, MD, PhD
Speakers: E. Martina Bebin, MD, MPA; Ian O’Neil Miller, MD; Jonathan Roth, MD
Seizure Types and Treatments for Infants and Children with TSC
Moderator: Joyce Wu, MD
Speakers: Sergiusz Jóźwiak, MD, PhD; Michael Wong, MD, PhD; Elizabeth Thiele, MD, PhD; James Wheless, MD
Accessing Early Childhood Services and Navigating the Education System
Moderator: Rebecca Anhang Price, PhD
Speaker: Anna Tinnerello
Genetics Made Simple
Moderator: Katherine Nathanson, MD
Speaker: Hope Northrup, MD
Navigating Developmental Issues in TSC
Moderator: Francis DiMario, Jr., MD
Speaker: Diane M. Danis, MD, MPH
ADHD and Behavioral Challenges in Children with TSC
Moderator: Patricia McGoldrick, NP, MSN, MPA
Speaker: Anna Byars, PhD
Track B: Transition
Managing Health Issues in Transition from Child to Adulthood in TSC
Moderator: Vicky Whittemore, PhD
Speakers: Petrus de Vries, MBChB, MRCPsych, PhD; Patricia Gibson, MSSW; Michael Frost, MD
Advocacy in the Education System for Transition into Adulthood
Moderator: Dana Holinka
Speakers: Dena Hook, Vice President of Outreach, TS Alliance; Santo Pino, EdD
Long-Term Care Planning and Guardianship
Moderator: Dena Hook, Vice President of Outreach, TS Alliance
Speakers: Yolande Erickson, Esq.; Stephen Hodson, CLTC
Transition into Adulthood: Respite Care and Residential Options
Moderator: Kathi Dills
Speakers: Theresa Varnet; John Hulbert, MD, FRCS, FACS
Transition into Adulthood: Vocational Training, College, Workshops and Employment
Moderator: Dena Hook, Vice President of Outreach, TS Alliance
Speaker: Jonathan Lucus
Aggressive Behavior Management
Moderator: Shafali Spurling Jeste, MD
Speaker: Tanjala Gipson, MD
Kidney Issues in Children and Young Adults with TSC
Moderator: Chris Kingswood, MBBS, MRCP, FRCP
Speakers: John Bissler, MD; Joshua Samuels, MD
Track C: Adults
Kidney Issues, Treatment Options and Clinical Trials in TSC
Moderator: Joshua Samuels, MD
Speakers: John Bissler, MD; John Hulbert, MD, FRCS, FACS; Chris Kingswood, MBBS, MRCP, FRCP
Lung Involvement in TSC and Treatment Options
Moderator: Joel Moss, MD, PhD
Speaker: Elizabeth Henske, MD
Seizure Management and Impact on Mood, Behavior and Sleep in Adults with TSC
Moderator: David Dunn, MD
Speakers: Peter Crino, MD, PhD; Orrin Devinsky, MD; Michael Kohrman, MD
Genetics, Reproductive Issues and Impact on Relationships
Moderator: Katherine Nathanson, MD
Speakers: Julian Sampson, DM, FRCP, FMedSci; Jennifer Glass, MS, CGC
Mental Health Issues in Living with TSC as an Adult
Moderator: Brooke Simsa
Speaker: Patricia Gibson, MSSW
Building and Sustaining Relationships
Moderator: Keith Hall
Speaker: Petrus de Vries, MBChB, MRCPsych, PhD
Organizing Your Thoughts and Emotions
Moderator: Keith Hall
Speaker: Petrus de Vries, MBChB, MRCPsych, PhD
Track D: Special Issues
Other Manifestations in TSC: Bone, Heart Liver, Pancreas, Skin, Teeth and Spine
Moderator: Steven P. Sparagana, MD
Speakers: Greg Mlynarczyk, DDS; E. Steve Roach, MD
Sleep Disorders in TSC
Moderator: Gregory Holmes, MD
Speakers: Jonathan Lipton, MD, PhD; James Riviello, Jr., MD
Affordable Care Act: Navigating the Complexities for Special Needs Care in TSC
Moderator: William McClintock, MD
Speaker: Diane Dorman
Autism Spectrum Disorder and Therapeutic Options
Moderator: David W. Dunn, MD
Speakers: Shafali Spurling Jeste, MD; Sarah J. Spence, MD, PhD
Special Needs Estates and Trusts
Moderator: Dana Holinka
Speakers: Theresa Varnet, Esq.; Stephen Hodson, CLTC
Coping Techniques for You, Your Spouse and Family
Moderator: Dena Hook, Vice President of Outreach, TS Alliance
Speakers: Laura Lubbers, PhD; Adrianne Cohen; Joe Blair; Aria Moss