fbpx
SKIP TO MAIN CONTENT

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

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

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:

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

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

 


Research Updates Series

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

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

 

 

 

 


Transition Workshop Sponsor

Transition Workshop Held in Partnership With

Life Stages Series Sponsors

Additional Sponsors