COVID-19 & TSC Webinar and Virtual Town Hall Recordings
Wednesday, August 12: COVID-19 and Back to School
Presented by: Shelly Meitzler (TSC Alliance Facilitator, Parent, and Education Parent Mentor), Shannon Grandia (Parent, Teacher, and TSC Alliance Dependent Adult Transition Resource Coordinator), Lisa Hart (Parent and Education Parent Mentor) and Kate Crossett (Special Education Director and TSC Alliance Education Parent Mentor)
Wednesday, June 17: TSC-Associated Neuropsychiatric Disorders (TAND) Webinar: Feeding Difficulties
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.
Thursday, May 28: Mosaicism in TSC
Moderated by:
Kari Luther Rosbeck, TSC Alliance President and CEO
Presented by:
David J. Kwiatkowski, MD, PhD Brigham and Women’s Hospital, Harvard Medical School, Boston, MA
Thomas Darling, MD, PhD Uniformed Services University, Bethesda, MD
Tuesday, May 26: How the Consensus Guidelines Improve Treatment and Care for Individuals with TSC
Co-hosted with TSC International (TSCi) and the European Tuberous Sclerosis Complex Association (E-TSC)
Featuring Presentations by:
Dr. Hope Northrup, Co-Director of the Tuberous Sclerosis Center of at McGovern Medical School and Memorial Hermann Hospital
Dr. Darcy Krueger, Director of the Tuberous Sclerosis Clinic and Associate Professor of Clinical Pediatrics and Neurology at Cincinnati Children’s Hospital
Moderated by:
Dr. Jose Carlos Ferreira
Friday, May 22: TSC/LAM Virtual Town Hall – Moving On From Shelter In Place
Co-hosted by The LAM Foundation and the TSC Alliance
As many states begin to reopen, the TSC Alliance and The LAM Foundation bring you this important Town Hall to help people with TSC and/or LAM prepare properly.
Living with COVID-19: Framing the Guidelines and What Individuals with TSC Need to Know to Manage Neurological Health During Phased Re-Opening
Peter Crino, MD, PhD, University of Maryland School of Medicine
What LAM Patients Need to Know to Minimize Risk During Phased Re-Opening
Frank McCormack, MD, University of Cincinnati School of Medicine
Managing Kidney-Related Aspects of TSC and LAM to Minimize Risk During Phased Re-Opening
John Bissler, MD, St. Jude Pediatrics Research Hospital & Le Bonheur Children’s Hospital
Tuesday, May 19: TSC-Associated Neuropsychiatric Disorders (TAND) Webinar: Effective Toileting Interventions
Presented by:
Dr. Lomas Mevers
Moderated by:
Shelly Meitzler, TSC Alliance Regional Program Manager, East
Many caregivers of children with TSC face difficulties with toilet training, so Dr. Mevers provides tips and resources on toilet training for children with developmental disabilities. Dr. Lomas 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.
Friday, May 15: Joint Virtual Town Hall – Rescue Meds, Seizure Tracker and Future Glimpse at Forecasting Seizure Risk
Co-hosted by SeizureTracker.com and the TSC Alliance
Moderated by:
Anup Patel, MD, Nationwide Children’s Hospital
Understanding Seizure Clusters
Anup Patel, MD, Nationwide Children’s Hospital
Download Dr. Patel’s Presentation
Managing Seizure Clusters with Rescue Medications
Orrin Devinsky, MD, NYU Hospital
Download Dr. Devinsky’s Presentation
Using Seizure Tracker to Keep Doctors Updated
Robert Moss, President, SeizureTracker
Download Rob’s Presentation
Leveraging Electronic Patient Diaries to Forecast Seizure Risk
Sharon Chiang, MD, PhD, UCSF Weil Institute for Neurosciences
Download Dr. Chiang’s Presentation
Tuesday, May 12: COVID-19 Management & TSC
Co-hosted with TSC International (TSCi) and the European Tuberous Sclerosis Complex Association (E-TSC)
Moderated by:
Drs. John Bissler and J. C. Kingswood
Neurological Aspects during the next phases of COVID-19 – Warning signs
Presented by Dr. Peter Crino
Download Dr. Crino’s Presentation
Lymphangioleiomyomatosis (LAM) during the next phases of COVID-19
Presented by Dr. Nishant Gupta
Download Dr. Gupta’s Presentation
Virus Management during next phases of COVID-19
Presented by Dr. Jon McCullers
Friday, May 8: Tips to Navigate Unemployment and the CARES Act During COVID-19
Presented by:
Jorie Cummis, CEO, NSN Employer Services, Inc.
Download a state-by-state guide on filing for unemployment provided by NSN Employer Services, Inc.
For additional Unemployment Insurance Resources from the National Disability Institute, visit: https://www.nationaldisabilityinstitute.org/financial-resilience-center/employment/
Monday, May 4: Community Voices in the Face of COVID-19
Featuring TSC community members sharing their personal experiences dealing with the COVID-19 pandemic while also juggling the ongoing challenges of TSC.
Presented by:
Carly Kaye, Heather Harden, Debora Moritz and Phillip Tallman
Moderated by:
Dr. Luke Mudd, Balanced Connections Mental Health
This webinar was made possible through educational grants from:
Friday, May 1: Accessibility to Treatments During COVID-19
Co-Sponsored by The Dravet Syndrome Foundation and the Lennox-Gastaut Syndrome Foundation
Moderated by:
Steven L. Roberds, Chief Scientific Officer, TSC Alliance
Featuring roundtable discussions with representatives from pharmaceutical companies, pharmacies and prescribing physicians.
This Joint Town Hall was made possible through educational grants from:
Monday, April 27: Community Programs and Support Services in the Face of COVID 19
Presented by:
Members of the TSC Alliance Communications, Community Programs and Support Services Departments
Learn from TSC Alliance staff members how they are supporting the TSC community during the COVID-19 pandemic and find out how you can help during May’s TSC Global Awareness Month of Caring. To learn more about the TSC Awareness Month of Caring click here.
Friday, April 24: Infantile Spasms in the Age of COVID-19 and Telemedicine
Presented by:
Martina Bebin, MD, MPA, TSC Clinic Director, University of Alabama Birmingham
Tuesday, April 21: TSC-Associated Neuropsychiatric Disorders (TAND) and Elopement
Presented by:
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
Friday, April 17: Remote Interventions for Behavioral Challenges
Presented by:
Shafali Jeste, MD, Center for Autism Research and Treatment, UCLA
Charlotte DiStefano, PhD, Clinical Instructor, Semel Institute for Neuroscience, UCLA
Tuesday, April 14: How to Manage Disruptive and Harmful Behavior During COVID-19
Hosted by the Child Neurology Foundation
Staff at the Child Neurology Foundation hosted a conversation between Nathan Call, PhD, BCBA-D – Clinical Director, Marcus Autism Center and Associate Professor, Emory University School of Medicine, Department of Pediatrics and Shelly Meitzler – Parent and Regional Program Manager, East for The TSC Alliance to discuss Management of Disruptive and Harmful Behavior During COVID 19.
Friday, April 10: Accessibility to Care During COVID-19
Co-Sponsored by Child Neurology Foundation, Dup15q Alliance, TSC Alliance
Presented by:
Charuta N. Joshi, MD; Elizabeth Thiele, MD, PhD; Shafali Jeste, MD; Jessica Krefting, BSN, RN
Moderated by:
Elizabeth Jalazo, MD
Download Dr. Joshi’s Presentation
Download Dr. Jeste’s Presentation
Download Jessica’s Presentation
Monday, April 6: Moving TSC Research Forward in the Face of COVID-19
Presented by TSC Alliance Staff Members: Dean Aguiar, PhD, Director, Preclinical Research; Jo Anne Nakagawa, Director, Clinical Projects & TSC Clinic Liaison; Gabrielle Rushing, PhD, Associate Director, Research; Zoë Fuchs; Science Project Coordinator; Katie Smith, Director, Government & Global Affairs
Moderated by Steve Roberds, PhD, Chief Scientific Officer
Learn more about the TSC Biosample Repository
Learn more about Government Advocacy
Friday, April 3: Managing Anxiety During COVID-19
Presented by Tanjala T. Gipson, MD, LeBonheur Children’s Hospital, Memphis, TN
March 30: Tips to Take Care of Yourself During the Pandemic
Presented by Patricia A. Gibson, MSSW, DHL, ACSW, Wake Forest University School of Medicine
March 27, 2020: Educating Your Children at Home, Part 2
Presented by Jill D’Braunstein, Speech-Language Pathologist, Claire Borkowski, Occupational Therapist, and Kate Crossett, Special Education Director
Download Claire’s Presentation
March 23, 2020: Educating Your Children at Home, Part 1
Presented by Shannon Grandia, First Grade Teacher, Staci Hanks, High School/Alternative Education Speaker, Sheri Garcia, Elementary Teacher, and Kirsten Carlson, Severe Special Education Teacher
Child Enrichment Activities for Homeschooling
During this webinar, elementary school teacher Sheri Garcia shared a useful list of educational resources and links for children while they are at home, which you can download below.
Online Resources for High School Students
During this webinar, high school teacher Staci Hanks shared some online learning resources for high-school-age students. You can download her presentation below.
March 20, 2020: TSC/LAM Virtual Town Hall: A COVID-19 Update
Drs. Peter Crino, MD, PhD, University of Maryland School of Medicine, Frank McCormack, MD, University of Cincinnati School of Medicine, Darcy Krueger, MD, PhD, Cincinnati Children’s Hospital Medical Center, and John Bissler, MD, St. Jude Pediatrics Research Hospital share considerations for impact of COVID-19 on management of TSC and LAM.
Para ver una versión del Ayuntamiento Virtual con subtítulos en español, haga clic aquí.