Individuals & Families

Videos and Webinars

In 2022, the TSC Alliance will host 6 webinars focused on research and featuring known experts in the TSC community as part of our Research Education Webinar Series. These free 1-hour presentations will include an open question-and-answer period and offer valuable information on TSC research, clinical trials, and more. Additionally, a research primer prior to the 2022 World TSC Conference will be held.

Learn More

In 2021, the TSC Alliance hosted a wide range of virtual educational activities, grouped by Life Stages, Research Updates, TSC-Associated Neuropsychiatric Disorders and Transition Workshops. You can view recordings from the 2021 E-Webinar Series here.

COVID-19 Webinar and Town Hall Series

The TSC Alliance continues to work diligently on behalf of everyone affected by tuberous sclerosis complex (TSC) during this challenging time. Throughout 2021, the TSC Alliance offered a series of webinars, open forums and virtual Town Halls to get timely information to help you manage a wide range of issues as we all work together through the COVID-19 pandemic. You can view recordings of previous COVID-19 webinars here.

2020 Virtual TSC & LAM Conference Videos

Re-watch videos from the 2020 Virtual TSC & LAM Conference Series. 

2018 World TSC Conference Videos

Re-watch videos of both the general sessions and track sessions from our 2018 World TSC Conference.

Webinar Recordings

TSC Alliance of NY/NJ Webinar: TSC Clinic Without Walls — June 27, 2021

Presented by: Clinic Without Walls serving NYC, Westchester, Hudson Valley & Connecticut Director: Steven Wolf, MD Co-Director: Patricia E. McGoldrick, NP, MSN, MPA TSC Clinic Director Steven Wolf and Co-Director Patricia McGoldrick provide an overview of their Clinic Without Walls. They share information on the services provided by the clinic, including accessing care through telemedicine and their network of specialists, and how to schedule an appointment.

Partnering With Your Pharmacy — June 17, 2021

Total Care Rx, a specialty pharmacy based out of NY, lead a discussion on how to better partner with your specialty pharmacy, including resources that can help you and your family ensure a better experience.

Download the Presentation
Download the Physician/Pharmacy “Get Specifics” Checklist

TSC-Associated Neuropsychiatric Disorders (TAND) Webinar on Feeding Difficulties — June 17, 2020

Presented by Valerie M. Volkert, PhD, BCBA-D, a Psychologist and Program Manager for the Feeding Program at Marcus Autism Center. She shares strategies for parents dealing with behaviors related to eating and other feeding issues common in TSC.

TSC-Associated Neuropsychiatric Disorders (TAND) Webinar on Effective Toileting Interventions — May 19, 2020

Many caregivers of children with TSC face difficulties with toilet training, so Dr. Lomas Mevers provides tips and resources on toilet training for children with developmental disabilities. Dr. Mevers is the current Director for the Severe Behavior Program at the Marcus Autism Center and is also an Assistant Professor in the Department of Pediatrics at Emory University School of Medicine.

TSC-Associated Neuropsychiatric Disorders (TAND) Webinar on Elopement — April 21, 2020

Dr. Mindy Scheithauer, Assistant Professor at Emory University School of Medicine and licensed psychologist and doctoral level board certified behavior analyst at the Marcus Autism Center, provides guidance for parents on how to handle your child’s elopement issues such as wandering, running away or leaving safe areas.

TSC-Associated Neuropsychiatric Disorders (TAND) Webinar on Problem Behaviors — March 19, 2020

Dr. Slocum Freeman, board-certified as a doctoral-level behavior analyst who manages day treatment cases in the Severe Behavior Program at Marcus Autism Center, discusses problem behaviors common with TSC-associated neuropsychiatric disorders (TAND).

Effective Behavioral Treatments for TSC-Associated Neuropsychiatric Disorders (TAND) Issues in TSC — January 15, 2020

Nathan Call, PhD, BCBA-D, Clinical Director at Marcus Autism Center, discusses effective behavioral treatments for TSC-associated neuropsychiatric disorders (TAND).

Sudden Unexpected Death in an Epilepsy Patient (SUDEP) — October 7, 2019

Douglas Smith, MD, discusses SUDEP in detail and offers participants the opportunity to ask questions.

Trauma 101 for Parents of Medically Complex Kids — June 25, 2019

In this webinar, Caroline Clyborne, LPC discusses how parents and caregivers of medically complex children and people living with chronic illness can cope with complex trauma, grief, and shame.

TAND 101: The Evaluation — May 28, 2019

In this webinar, Dr. Tanjala Gipson discusses the importance of proper evaluations for TSC-associated neuropsychiatric disorders (TAND).  Additional resources cited by Dr. Gipson include TSC-Associated Neuropsychiatric Disorders (TAND) and Education and her TAND 101 Powerpoint presentation.

TAND: How to Navigate the Special Education System — May 21, 2019

Special Education Attorney Kathleen Werbner, Esq., helps you “learn about your child’s rights and and how to navigate the special education system.”

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.