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COVID-19 & TSC Webinar and Virtual Town Hall Recordings

Wednesday, August 12: COVID-19 and Back to School

Presented by: Shelly Meitzler (TS Alliance Facilitator, Parent, and Education Parent Mentor), Shannon Grandia (Parent, Teacher, and TS Alliance Dependent Adult Transition Resource Coordinator), Lisa Hart (Parent and Education Parent Mentor) and Kate Crossett (Special Education Director and TS 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, TS 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

Download the Presentation


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 Tuberous Sclerosis Alliance

As many states begin to reopen, the TS 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, TS 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 Tuberous Sclerosis 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.

Moderated by:
Julie Scroggins, Community Programs Manager, West, TS Alliance

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, Tuberous Sclerosis 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 TS Alliance Communications, Community Programs and Support Services Departments

Learn from TS 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.

Download Slides


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

Download Slides


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

Download Slides


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 Tuberous Sclerosis 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, Tuberous Sclerosis 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 TS 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

Download the Slideshow

Find a TSC Clinical Trial

Learn more about the TSC Biosample Repository

Register for TSC Academy

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

Download Pat’s Presentation


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 Jill’s Presentation

Download Claire’s Presentation

Download Kate’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.

DOWNLOAD LIST

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.

DOWNLOAD RESOURCES


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.