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

Michelle Von Schleinit – Community Speaker – Importance of Participating in Research Studies, Parent of a Child/Adult with TSC in Research Study – Video

Clinical Consensus Guidelines and New Epilepsy Treatments on the Horizon (CBD) – Dr. Elizabeth Thiele  – Video

Breakthroughs in Understanding the Cause of TSC and New Therapies on the Horizon (mTOR) – Dr. Peter Crino – 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