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2021 E-Webinar Recordings

View Upcoming E-Webinar Schedule

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

Life Stages | Transition | TAND | Research Updates


Life Stages Series

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

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

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

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

 


Research Updates Series

February 11, 2021 — Timber Pharmaceuticals: Research Update and Roundtable Discussion Focused on Treatment of Facial Angiofibromas
Presenter: Jessica Raiz, MPH, Senior Director, Clinical Operations, Timber Pharmaceuticals

November 12, 2020 — Marinus, Ganaxolone and the TSC CALM Study
Presenter: Mary Kay Koenig, MD
Download the Presentation

 

 

 

 


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