Individuals & Families

Webcasts and Videos

Webcasts

Important Update About the Use of Vigabatrin — June 13, 2017

This webinar was presented by Dr. Martina Bebin, Professor of Neurology and Pediatrics, Department of Neurology, University of Alabama Birmingham.  Download Dr. Bebin’s slides and and view the webinar recording here.

Child Neurology Community Conversations from the Voices of the Provider, the Caregiver, and the Advocate: Medical Cannabis in Epilepsy — December 13, 2016

This webinar from the Child Neurology Foundation presented the latest in science on medical cannabis’ use in treatment of epilepsy, future considerations, and discuss existing gaps in communication among medical professionals, families, and advocacy groups.

Patient Assistance and Access Program Changes: Important Information Impacting Vigabatrin and Everolimus — July 18, 2016

This webinar was presented by Dr. Martina Bebin.  Download the slides and and view the webinar recording hereADDITIONAL INFORMATION FROM THE WEBINAR: AfiniTRAC is a comprehensive treatment and reimbursement support program open to eligible patients on Afinitor. Your healthcare provider need to fill out and sign the enrollment form. A patient or caregiver, over the age of 18, also need to fill out and sign the enrollment form. For more information, you can call 1-888-9AfiniTRAC (1-888-923-4648).

Sudden, Unexpected Death from Epilepsy (SUDEP) — February 18, 2014

This webinar was presented by Orrin Devinsky, MD. Download Dr. Devinsky’s slides or watch the recording of the webinar below.

Vigabatrin Associated Visual Field Loss (VAVFL): What You Need to Know — January 27, 2014

This webinar was presented by Darcy Krueger, MD, PhD.

2014 World TSC Conference Videos

worldconf-w-sponsorsThe TS Alliance is pleased to offer online videos from the majority of sessions recorded during the 2014 World TSC Conference, held July 3-6 in Washington, DC. To view the videos, simply choose an educational track below:

Videos: General Sessions

These sessions are of interest to anyone and cover the recently updated TSC clinical consensus guidelines, TSC research, emerging treatments, government advocacy for TSC funding, and the emerging field of personalized medicine.

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 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.

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 A: Pediatrics

These sessions specifically address questions of parents with children, including seizure types and treatments, epilepsy surgery and imaging, accessing early childhood services, navigating the education system, genetics, and behavioral challenges with hands-on practical approaches.

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 C: Adults

This track addresses 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, current clinical studies and updates on new treatment options, reproductive issues, lung involvement, seizure management in adults with TSC, and mental health issues.

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

En Espanol

Repaso de CET Directrices Clinicas de Consenso (Review of the TSC Clinical Consensus Guidelines)
Speaker: Darcy Krueger, MD, PhD

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, the Affordable Care Act and its implications on those living with TSC, other manifestations of TSC, autism spectrum and therapeutic options, financial protection, accessing government services, and coping techniques.

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

 

Financial Considerations (Insurance) and Accessing Government Services: SSI, Waivers, Medicaid, Etc.
Moderator:
Yolande Erickson, Esq. 
Speaker:
Theresa Varnet, Esq.

 

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