Individuals & Families

Videos and Webinars

Videos

2018 World TSC Conference Videos

The Tuberous Sclerosis Alliance and TSC International are pleased to offer online videos from the majority of sessions recorded during the 2018 World TSC Conference, held July 25-29 in Dallas, TX.  Click here to watch the videos online.

Webinars

ABLE Program: What You Need to Know to Get Started — October 23, 2018

Missouri State Treasurer Eric Schmitt gave a presentation about the Achieving a Better Life (ABLE) Program. ABLE accounts allow individuals with disabilities and their families to save for long-term needs without harming eligibility for federal means-tested public benefits programs such as Medicaid and Social Security. This session offered an overview of the ABLE program, explained how to open an ABLE account, and discussed various items to consider before opening an ABLE account.

SeizureTracker.com: Your Role in Supporting Research Toward Seizure Prediction and Improving Quality of Life — April 25, 2018

In this webinar, Robert Moss, Founder of SeizureTracker.com, discussed the evolution of Seizure Tracker™ and highlighted the TSC community’s role in advancing research. Using patient entered data, the Seizure Tracker has been leveraged in the epilepsy research community to explore seizure prediction and forecasting methods. He will also showcase the TSC community’s role in the growth of the Seizure Tracker system along with the impact it has on improving quality of life for people with epilepsy.

TAND 101:   Who Is At Risk and What You Need to Know Before Your Child’s IEP — April 20, 2018

This webinar was presented by Tanjala Gipson, MD. Additional resources include Petersons Colleges for Students with Learning Disabilities or AD/HD, What is Section 504? and Understanding the Individuals with Disabilities Education Act: Your Rights as a Parent.

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 below:

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 below.  ADDITIONAL 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.