LGSF Webinars
Empowering Families through Education
Rescue Med Series: Part 2
Rescue Medications...
A Clinicians Perspective & Advice
Wednesday, July 8th, 2020
2pm PT | 3pm Mountain | 4pm CT | 5pm EST
Guest Speaker
Dr. Michael Chez
In this session, Dr. Michael Chez—a pediatric Neurologist at Sutter Health in California—will breakdown the different kinds of rescue meds, how they work, and what they are typically used for. He'll help families understand how he thinks about when and how to most effectively use rescue medications and will speak to how to engage your loved one's neurologist about making an individualized Seizure Action Plan.
Webinar made possible with support from:
Rescue Med Series: Part 3
The Lived Rescue Medication Experience
Wednesday, July 22nd, 2020
3pm PT | 4pm Mountain | 5pm CT | 6pm EST
Join our panel of caregiver experts as we discuss their personal experiences with rescue medications, advocating, and individualized seizure emergency plans.
Webinar made possible with support from:
Hear Families first-hand experiences
Rescue Med Series: Part 4
Individualized Seizure Emergency Plan (I-SEP)
Wednesday, August 12th, 2020
2pm PT | 3pm Mountain | 4pm CT | 5pm EST
Hands-on, Peer-led workshop to help you develop or update your loved one's Individualized Seizure Emergency Plan (I-SEP)
Webinar made possible with support from:
Rescue Med Series Part 1:
Rescue Medications in Severe DEE's
Anne T. Berg, PhD
Elaine Wirrell, MD
Parent Driven Data:
What do we know about LGS?
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
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?
LGS During the Covid-19 ERA
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
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.
Effective IEP Advocacy Skills
Overview of the skills needed to make you an effective advocate during the IEP process.
Seizure Alert Devices & Technology
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.
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?
Why the FDA needs to hear your voice
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?
How is LGS diagnosed? What are the goals for treatment?
View Slides
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.
The importance of self-care. Know the signs of caregiver burnout and how to prevent it.
The Latest Research in LGS
Learn about what's new in LGS research and science.
.png)
