LGSF Webinars

Empowering Families through Education

Upcoming Webinars

Tuesday, August 25th, 2020

Monday, August 24th, 2020

An Introduction to Valtoco (diazepam nasal spray)

Join the LGS Foundation as we welcome representatives from Neurelis, Inc. who will provide an overview of Valtoco (diazepam nasal spray) and its use in acute repetitive seizures and seizure clusters

Recent Webinars

Rescue Med Series: Parts 1-4

Brought to you jointly by the

LGS Foundation and DEE-P Connections

This four-part webinar series on Rescue Medication use in individuals with severe Developmental and Epileptic Encephalopathies (DEEs) was undertaken due to a concern about the lack of research around efficacy and the poor understanding of how rescue meds are being used with individuals with severe DEEs. Our goal is to bring all the most critical information and resources to families caring for those with DEEs, help them start conversations with their neurologists/epileptologists to find the right medications and develop detailed Individualized Seizure Emergency Plans (I-SEP).

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Rescue Med Series Part 1: 

Rescue Medications in Severe DEE's 

Anne T. Berg, PhD

Elaine Wirrell, MD

Rescue medication community results. What's out there. How to choose the right one(s)

View Elaine's slides

View Anne's slides

Rescue Med Series Part 2:

Rescue medications.

A clinicians perspective & advise.

Dr. Michael Chez

Dr. Chez gives an inside perspective on rescue medication treatment for severe DEE's, seizure plans, and how to communicate with your medical team

View Slides

Seizure Emergency Plan Steps

4 Questions for your Neurologist

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Rescue Med Series Part 3: 

The lived rescue medication experience

Peer Expert Panel

Caregivers discuss their personal experience with seizures, rescue medications, and insights on creating their seizure emergency plan

 

Rescue Med Series

Part 4:

Workshop to develop/update SEP

Tracy Dixon-Salazar, PhD

Dr. Tracy Dixon-Salazar reviews what we've learned in rescue meds parts 1-3. A panel of caregivers walks families through filling out their individualized seizure emergency plan (I-SEP).

Download the I-SEP Template

This series was made possible with support from:

Parent Driven Data:

What do we know about LGS? 

Anne T. Berg, PhD

The LGS Foundation welcomes Anne Berg, PhD in a discussion on her recent Natural History Project and Ability Study findings. These studies focus on parent and caregiver reporting of the multiple challenges that come with the LGS diagnosis.

View Slides

How to manage LGS in the current Covid-19 Pandemic

Anup Patel, MD

How is the current COVID-19 pandemic affecting those in the rare epilepsy community?
What does the LGS community need to keep in mind during this crisis?
How can we prepare for our loved one’s tele-health visit with the neurological provider?

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LGS During the Covid-19 ERA

Tracy Dixon-Salazar, PhD

Dr Tracy Dixon-Salazar LGSF Director of Research and Strategy answers questions regarding the Covid-19 pandemic, and its impact on the LGS community.

Covid-19 Coping Tips Learned from the Rare Community

Amanda Cothern, LPC

Dr. Amanda Cothern will share her insights into the LGS community and how the lessons learned from caring for a loved one with a rare disease can be applied to coping in the age of a pandemic.

Archived Webinars

Effective IEP Advocacy Skills

Monika Jones, JD

Overview of the skills needed to make you an effective advocate during the IEP process.

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Seizure Alert Devices & Technology

Tom Stanton

Tom Stanton, Executive Director of the Danny Did Foundation will share his knowledge of the most popular seizure detection devices on the market and how effective they may be.

Rescue Medications

Larry Hirsch, MD

When do you give them? What options are out there? Why should you have a Seizure Action Plan? What are the risks and/or benefits of using them?

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Why the FDA needs to hear your voice

Tracy Dixon-Salazar, PhD

On November 1st, the LGS Foundation will host a meeting for individuals affected by developmental and epileptic encephalopathies (DEE), including LGS, and their caregivers to share what it is like living with DEE and LGS with the FDA and those who make drugs and devices.

Sudden Unexpected Death in Epilepsy (SUDEP)

Jeffrey Buchhalter, MD, PhD

What is SUDEP? Can it be prevented and how? Is there ongoing research into the causes of SUDEP?

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What is LGS? 

John Millichap, MD

How is LGS diagnosed? What are the goals for treatment? 

View Slides

LGS & Clinical Trials

Eric Marsh, MD, PhD

What treatments are approved for seizures in LGS and what other treatments are used? What is a clinical trial?  Get updated information on current trials.

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Caregiver Burnout

Amanda Cothern, LPC

The importance of self-care. Know the signs of caregiver burnout and how to prevent it.

The Latest Research in LGS

Tracy Dixon-Salazar, PhD

Learn about what's new in LGS research and science.

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