Decoding Developmental Epilepsies

We serve two distinct communities. First, we serve those living with SCN8A and their families.

• Fund Raising and/or Fund Distribution

Eleanor Kaplan Foundation Inc

To raise funds and awareness to develop cures for Ultra Rare Neurodegenerative Diseases.

• Diseases, Disorders, Medical Disciplines N.E.C.

Lydian Accelerator

Our mission is to accelerate genetic treatments for children suffering from genetic diseases.

• Birth Defects, Genetic Diseases Research

Fam177a1 Research Fund

Founder and President, FAM177A1 Research Fund The mission of the FAM177A1 Research Fund is to improve the lives of those affected by FAM177A1 Associated Disorder through research and development of transformative therapies.

• Fund Raising and/or Fund Distribution

Arid1B Research Foundation

Accelerating the development of disease-modifying treatments for #ARID1B-RD (haploinsufficiency) - the most frequently mutated gene in de novo NDDs (ASD, ID).

Kruzn for A Kure Foundation

Kruzn For A Kure Foundation is a non-profit organization funding research for an extremely rare genetic disease & fatal type of dwarfism, #SIOD.

• Birth Defects, Genetic Diseases Research

Valerias Foundation for Kcnt1 Research Inc

#rettevaleria #savevaleria #helpvaleria #supportvaleria #valeriasKCNT1 #raredisease #epilepsy #geneticdisorder #meinestimmefuereinleben #teamvaleria The Valeria Foundation is committed to achieving that: [+] to promote knowledge about the existence and cure of orphan diseases.

Lightning and Love Foundation

Founder of Lightning and Love foundation and mom to two ultra-rare THAP12 genetic epilepsy disease daughters searching for a cure.

• Epilepsy Research

Shay Emma Hammer Research Foundation

We’re working to document the first 1000 cases of SCN8A gene variants and connect families Advancing epilepsy awareness.

• Birth Defects, Genetic Diseases

STXBP1 FOUNDATION

Non-profit dedicated to ending STXBP1-related disorders, rare neurodevelopmental and epileptic encephalopathies, and spreading awareness of this rare disease.