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.
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
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.
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
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
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
The foundation maintains a patient registry to:
- Connect researchers with patients
- Collect natural history data
- Facilitate clinical trial recruitment
- Track outcomes across treatments
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
The foundation is governed by a board of directors comprising:
- Parents of children with LKS
- Healthcare professionals specializing in epilepsy
- Researchers in neurodevelopmental disorders
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
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
- Individual donations
- Memorial and honorarium gifts
- Corporate matching
- Planned giving
- Family outreach
- Event planning
- Research advocacy
- Fundraising
- Contact legislators about rare disease research funding
- Share patient stories
- Participate in awareness events