The Landau-Kleffner Syndrome Foundation (LKSF) is a non-profit organization dedicated to supporting individuals with Landau-Kleffner syndrome (LKS) and related epilepsy-aphasia spectrum disorders. The foundation supports research, provides education and resources to families and healthcare providers, and promotes awareness of these rare neurodevelopmental disorders.
Mission
The Landau-Kleffner Syndrome Foundation's mission is to:
Fund research into the causes, treatments, and cures for LKS and related disorders
Provide support and resources to affected families
Educate healthcare professionals about epilepsy-aphasia spectrum disorders
Advocate for increased awareness and research funding
History
The foundation was established by parents and caregivers of children diagnosed with Landau-Kleffner syndrome, a rare disorder first described by William Landau and Frank Kleffner in 1957. The organization has grown to serve an international community of families and researchers.
Activities
Research Funding
LKSF supports research into:
Genetic basis: Understanding GRIN2A and other genetic causes
Treatment approaches: Pharmacological and behavioral interventions
Natural history: Long-term outcomes for patients
Novel therapeutics: Gene therapy and targeted approaches
Family Support
The foundation provides:
Information resources: Educational materials about LKS
Family networking: Connecting affected families
Conference support: Annual meetings and workshops
Crisis support: Resources for newly diagnosed families
Awareness and Advocacy
Medical education: Training healthcare providers about LKS
Public awareness: Increasing recognition of epilepsy-aphasia disorders
Policy advocacy: Supporting rare disease research funding
International collaboration: Partnering with similar organizations worldwide
Programs
Annual Family Conference
LKSF hosts an annual conference bringing together:
Families affected by LKS
Researchers studying epilepsy-aphasia disorders
Healthcare providers specializing in neurodevelopmental epilepsy
Presentations on latest research and treatment approaches
Patient Registry
The foundation maintains a patient registry to:
Connect researchers with patients
Collect natural history data
Facilitate clinical trial recruitment
Track outcomes across treatments
Research Grants
LKSF provides competitive research grants for:
Basic science research on LKS pathophysiology
Clinical studies of treatment efficacy
Development of novel therapeutic approaches
Training the next generation of LKS researchers
Leadership
The foundation is governed by a board of directors comprising:
Parents of children with LKS
Healthcare professionals specializing in epilepsy
Researchers in neurodevelopmental disorders
Contact Information
Website: www.lksfoundation.org
Email: info@lksfoundation.org
Location: United States (international reach)
Partnerships
LKSF partners with:
CURE Epilepsy: General epilepsy research funding
Epilepsy Foundation: National epilepsy advocacy
American Epilepsy Society: Professional organization
International League Against Epilepsy (ILAE): Global epilepsy community
GRIN2A research groups: Genetic research collaborations
Impact
Since its founding, LKSF has:
Funded over $2M in research grants
Connected thousands of families
Hosted 15+ annual conferences
Supported multiple clinical trials through patient recruitment
How to Support
Donations
Individual donations
Memorial and honorarium gifts
Corporate matching
Planned giving
Volunteer Opportunities
Family outreach
Event planning
Research advocacy
Fundraising
Advocacy
Contact legislators about rare disease research funding
The following diagram shows the key molecular relationships involving Landau-Kleffner Syndrome Foundation discovered through SciDEX knowledge graph analysis: