The Lennox-Gastaut Syndrome (LGS) Community: A Resource for Support

"It was a relief to find other people out there with the same symptoms as Elizabeth."

– Lucinda, mother of teenage daughter Elizabeth

Finding support is a must when you are an LGS caregiver. There are a lot of resources available, including advice from other caregivers who understand because of their own similar experiences. Find some guidance in the following places:

Online Communities

LGS Together

The LGS Together Facebook page helps caregivers educate, inspire, and enrich one another.

LGS Foundation

The LGS Foundation’s mission is to improve the lives of individuals living with Lennox-Gastaut syndrome through research, programs, and support.

Epilepsy Foundation

The Epilepsy.com Community Forum is a virtual chat room where members communicate in real-time to ask questions and offer personal advice.

Education Programs

Strategies for Success

A webinar series to provide parents, family members, and other caregivers with information, resources, and strategies to successfully communicate with your loved one with epilepsy.

Seizure Training for School Personnel

Developed by the Epilepsy Foundation in response to the need for a consistent educational tool to help promote a positive social and educational environment for students living with epilepsy.

First Responder Training

Resources and training to help first responders better understand how to recognize and respond to someone having a seizure. 

Support Services

Social Security

A valuable resource for information about social security programs, including how to apply for Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) benefits as well as employment support programs for young people with disabilities.

Accessible Home Improvement of America (AHIA)

Provides information on obtaining funding that can be used for accessibility improvements in the home to help accommodate a loved one with a disability.

Family Caregiver Alliance

A community-based nonprofit organization that addresses the needs of families and friends providing long-term care for loved ones.

HelpGuide

Offers help in finding and choosing respite services as well as strategies for successful respite care.

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