Helpful Links

Most links provided are for resources within the United States. 

Council for Exceptional Children

Organization dedicated to improving the special education system.

Idea 2004 Parent Guide 

A comprehensive guide to the Individuals with Disabilities Act

Wrights Law 

Resources which provides case studies, information and advocacy for special education.

Special Education Advocacy

Education and Advocacy

Find a Neurologist / Epilepsy Center

Through the American Epilepsy Society

Through the American Academy of Neurology

Through the National Association of Epilepsy Ctrs

Prescription or Financial Assistance

RX Assist Program

Needy Meds

Caring Voice Coalition

LGS Foundation Patient Assistance Program

Family Wize

Medication Reminders:

www.cadexproducts.com
www.epill.com

Seizure Assistance Dogs:
Paws with a Cause
Canine Assistants
Four Paws for Ability

Helmets/headgear:
www.danmarproducts.com

www.sportsadvantage.com

www.guardianhelmets.com

www.crasche.com

Seizure Diaries:
www.seizuretracker.com

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Safety / Alert Items:

Safety Bed

Smart Watch

Emfit Monitor

SAMi Alert Monitor

Educational / Information Resources

LGS Educational Materials

Brochures, infographics and posters from the LGS Foundation - free to download or order online

LGS Together

Living with LGS

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Seizure Clusters Connect

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Other Resources

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Rare Bears

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State by State List of Waivers

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Complete List of Free Things for Special Needs

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Miracle Flights

Legal Services & Resources

Americans with Disabilities Act

Special Needs Advocacy

Future Planning

ABLE Act

Adults & LGS

Got Transition

Special Needs Planners

How to Plan for a Child With Special Needs

Disability Organizations / Websites:

Disability Scoop

The ARC

Family Voices

Special Olympics

The Mighty

Wish Granting Organizations

Make a Wish Foundation

Wishes for individuals under the age of 18 with life-threatening illnesses

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Dream Foundation

For adults with life-threatening illnesses

LGS Foundation Gives Kids the World Partnership

The LGSF awards one LGS family per year an all-expense paid trip to Give Kids the World Resort in Orlando, FL.

Epilepsy Camps

NYU FACES Camp

Epilepsy Foundation (camps are held by local affiliates)
Special Olympics

Camp Courageous

Open-Access Medical Journal Articles on LGS

Special Issue: Current Strategies for the Management of LGS

(Wheless, Pellock. Epilepsia, 2014)

Lennox-Gastaut Syndrome

(Cherian, et al. Medscape. Updated Feb 23, 2015)

Treatment of LGS: Overview and Recent Findings

(Rijckevorsel. Neuropsychiatric Disease Treatment, 2008)

Lennox-Gastaut: Impact on the Family & Caregivers

(Gibson, PA. Journal of Multidisciplinary Healthcare, 2014)

Impact of Lennox-Gastaut Syndrome (LGS) on health-related quality of life (HRQL) of patients and caregivers: Literature review (Gallop, et al. Seizure. 2009)

Strategies for Transitioning to Adult Care for Youth with Lennox-Gastaut Syndrome

Camfield, Gibson, Douglass (Epilepsia, 2011)

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A Team Approach to Caring for Individuals with Intellectual and Developmental Disabilities and Epilepsy

Kothare, Brown, McGoldrick, McNew, Wolf (White Paper, 2017)

The LGS Foundation does not endorse any one specific resource over another. If you have a helpful resource that the LGS Foundation should consider adding to this list, please email christina@lgsfoundation.org.