2021 E-Webinar Recordings

Click one of the following links to be directed to the corresponding recordings.

Life Stages | Transition | TAND | Research Updates

Life Stages Series

December 15, 2021 — Refractory Epilepsy in Adults with TSC
Presenters: Peter Crino, MD, PhD, TSC Clinic Director at the University of Maryland Medical Center, Chair of the TSC Alliance Board of Directors and Derek Bauer, MD, TSC Clinic Co-Director at the University of Virginia (UVA) Tuberous Sclerosis Clinic

November 15, 2021 — Refractory Epilepsy 1: Children & Surgery
Presenter: Dr. James Wheless, MD, Professor and Chief of Pediatric Neurology, University of Tennessee Health Science Center and Director, Neuroscience Institute and Le Bonheur Comprehensive Epilepsy Program, Le Bonheur Children’s Hospital; Dr. Howard Weiner, MD, Professor, Pediatric Neurosurgery and Vice Chairman, Baylor College of Medicine and Chief of Neurosurgery at Texas Children’s Hospital; and Dr. Gerald Grant, MD, FACS, Endowed Professor in Pediatric Neurosurgery, Stanford Health, and Division Chief of Pediatric Neurosurgery at Lucile Packard Children’s Hospital Stanford

October 27, 2021 — Tumor Growth: Kidneys, Liver, and Pancreas
Presenter: Lyndsay Harshman, MD, pediatric nephrologist, Medical Director of Pediatric Kidney Transplant at the University of Iowa Stead Family Children’s Hospital, and Co-Director of the University of Iowa Tuberous Sclerosis Clinic
Download Dr. Harshman’s Presentation

September 28, 2021 — Understanding the TSC Genes: TSC Genetics Made Simple
Presenter: Jennifer Glass, MS, LGC, CGC, Genetic counselor at Cincinnati Children’s Hospital Medical Center
Download Jennifer’s Presentation

June 24, 2021 — LAM in TSC: Surveillance, Treatment and Research
Presenter: Souheil Y. El-Chemaly, MD, Clinical Director of the Center for LAM Research and Clinical Care at Brigham and Women’s Hospital
Download Dr. El-Chemaly’s Presentation

April 27, 2021 — Genetics and Pregnancy in Tuberous Sclerosis Complex
Presenters: Hope Northrup, MD, Professor of Pediatrics, Director, Division of Medical Genetics; Joshua A. Samuels, MD, MPH, Professor of Pediatrics, Division of Nephrology; and Rosa M. Estrada-Y-Martin, MD MSc CMQ FCCP, Professor of Medicine, Divisions of Critical Care, Pulmonary and Sleep Medicine; all from The University of Texas Health Science Center at Houston – McGovern Medical School
Download Dr. Northrup’s Presentation
Download Dr. Samuels’ Presentation
Download Dr. Estrada-Y-Martin’s Presentation

February 26, 2021 — Dermatologic Manifestations of TSC and Management
Presenter: Joyce Teng, MD, PhD, Director of Dermatology and Clinical Professor of Dermatology at the Stanford Children’s Health – Lucile Packard Children’s Hospital Stanford
Download the Presentation

January 27, 2021 — Overcoming Hurdles: Insurance, Scripts and Specialty Pharmacy
Presenters: Jeff Krol, VP, Market Access & Payer Strategy, Greenwich Biosciences Ashley Pounders, MSN, FNP, Director, Medical Affairs, TSC Alliance
Download the Presentation

Transition Workshop Series

July 7, 2021 — Assisted Living, Assisted Employment and Day Programs
Presenters: Deanna Eble, Esq., Partner at Russo Law Group, P.C. and Lisa Szilagyi, Founder/Director at The Aurelia Foundation Creative Steps Adult Program
Download the Presentation

June 15, 2021 — College, Housing and Employment
Presenters: TSC Alliance Future Leaders Class of 2021: Preston Fitzgerald, Jonathan Goldstein, Celie Johnson, Kirk McCreary, Presley Mylar and Emily Racenet
Download the Presentation

May 5, 2021 — Guardianship Options, Financial Planning and Government Benefits
Presenters: Kelly Piacenti, MA, CHSNC®, Head of SpecialCare at MassMutual, and Yolande Ericskon, Esq., Conservatorship Attorney at Bet Tzedek Legal Services
Download the Presentation

April 7, 2021 — Navigating the Transition to Adult Care
Presenters: Mary Zupanc, MD, Co-Medical Director of the CHOC Neuroscience Institute and the University of California-Irvine (UCI) Division Chief for Pediatric Neurology
Download the Presentation

March 3, 2021 — Building the Transition Individualized Education Program
Presenters: Lilian Ansari, TSC Alliance Community Programs Resource Advisor and Shelly Meitzler, TSC Alliance Community Programs Manager, East
Download the Presentation

February 3, 2021 — Introduction to Transition to Adult Services and Overview of Child Neurology Foundation Transition Toolkit
Presenter: Rebecca Schultz, PhD, APRN, CPNP
Download the Presentation
Download Health and Long-Term Care Plan TOC Template

Other Resources:

TSC-Associated Neuropsychiatric Disorders (TAND) Series

December 2, 2021 — Adult-Specific Issues: Anxiety, Anger and Depression
Presenters: Dr. Andrew Liu, MD, MS, Duke University School of Medicine and Melyssa McDonough, MS, BCBA
Download Dr. Liu’s Presentation
Download Melyssa’s Presentation

November 9, 2021 — Medication Options
Presenter: David W. Dunn, MD, the Arthur B. Richter Professor of Child Psychiatry and Professor of Psychiatry and Neurology at Indiana University School of Medicine
Download Dr. Dunn’s Presentation

September 23, 2021 — TAND: Sleep
Presenters: Drs. Stacey Bissell, PhD, Cerebra Network Postdoctoral Research Fellow, School of Psychology and Jonathan Lipton, MD, PhD, Assistant, Department of Neurology, Boston Children’s Hospital, Assistant Professor of Neurology, Harvard Medical School
Download Dr. Lipton’s Presentation
Download Dr. Bissell’s Presentation

August 17, 2021 — TAND: Research Update
Presenters: Drs. Stacey Bissell, PhD, Cerebra Network Postdoctoral Research Fellow, School of Psychology, Tanjala Gipson, Director, Neurodevelopmental Disabilities Clinic, Boling Center for Disabilities and Director, TSC-Associated Neuropsychiatric Disorders Clinic, Le Bonheur Children’s Hospital and TSC Alliance Associate Director of Research Gabrielle Rushing, PhD
Download Dr. Bissell’s Presentation
Download Dr. Gipson’s Presentation
Download Dr. Rushing’s Presentation

Additional Resources:

TAND & Education publication
Studies looking at the psychological/psychiatric impacts of COVID pandemic (not the infection itself, but dealing with shut-downs, familial/parent stressors, etc.), particularly in the UK
If you would like help navigating educational resources for someone with TSC, please begin by completing the intake form. We are committed to responding to all requests within 48 hours on business days.

June 14, 2021 — Aggressive Behavior and Management
Presenter: Nathan A. Call, PhD, BCBA-D, Clinical Director, Marcus Autism Center, Associate Professor, Emory University School of Medicine, Department of Pediatrics
Download the Presentation

April 21, 2021 — Early Interventions
Presenters: Shafali Jeste, MD and Connie Kasari, PhD
Download the Presentation

March 17, 2021 — Managing Treatment & TAND Specialists
Presenter: Billy Holcombe, PhD
Download the Presentation

Executive Functioning Resources

The Smart but Scattered Guide to Success: How to Use Your Brain’s Executive Skills to Keep Up, Stay Calm, and Get Organized at Work and at Home by Dawson & Guare
FLIPP the Switch: Strengthen Executive Function Skills by Sheri Wilkins, Ph.D. and Carol Burmeister, M.A.

Anxiety Resources

The Anxiety and Phobia Workbook by Edward Bourne, Ph.D.
Little Ways to Kelp Calm and Carry On: Twenty Lessons for Managing Worry, Anxiety, and Fear by Mark Reinecke, Ph.D.
The Cognitive Behavioral Workbook for Anxiety by William Knaus, Ed.D.

January 21, 2021 — ADHD/OCD
Presenter: Jamie Capal, MD
Download the Presentation

Research Updates Series

December 1, 2021 — TSC Alliance Self-Report Portal and the TAND-SQ
Presenters: Petrus de Vries, MBChB, FRCPsych, PhD; Anna Jansen, MD, PhD; Gabrielle Rushing, PhD, TSC Alliance Associate Director, Research; and John Putzke, PhD, MSPH, President and Co-Founder of ScienceTRAX
Download Gabrielle’s Presentation

July 13, 2021 — Clinical Trial Overview: Cannabidiol Oral Solution as an Add On Therapy in Infants with Seizures Caused by TSC
Presenter: Darcy Krueger, MD, PhD, Director, Tuberous Sclerosis Clinic at Cincinnati Children’s Hospital and Associate Professor, UC Department of Pediatrics
Download the Presentation