The SUDEP Institute: Coordinated by the Epilepsy Foundation of America, the SUDEP Institute is a collaboration of nonprofit organizations, medical professionals, parent advocates, and government agencies. It offers SUDEP education for families and doctors; counseling for bereaved families; and supports research into the causes of and ways to prevent SUDEP. Citizens United for Research in Epilepsy (C.U.R.E.): CURE identifies and funds cutting-edge research, challenging scientists worldwide to collaborate and innovate in pursuit of solutions for epilepsy. They have funded millions of dollars into SUDEP research. They are based in Chicago.
Finding a Cure for Epilepsy and Seizures (FACES): The mission of FACES is to improve the quality of life for all those affected by epilepsy and seizures. FACES is affiliated with NYU Langone Medical Center and its Comprehensive Epilepsy Center. The staff of FACES works closely with the efforts of NASR to advance the goals of the registry and to provide support to bereaved families. They are based in New York City.
Partners Against Mortality in Epilepsy (PAME): PAME is a four-day learning event devoted predominantly to SUDEP, where patients and parents, scientists, bereaved families and advocates groups come together to understand and support each other. This conference is held every other year, and will take place next in June 2016, in a location TBD.
The Chelsea Hutchison Foundation: CHF was formed by two parents after the loss of their daughter Chelsea to SUDEP. The main focus of the CHF is to provide information and funding related to seizure response dogs and seizure monitoring devices. They are based in Colorado.
The Danny Did Foundation: The DDF was formed by two parents after the loss of their son Danny to SUDEP. Danny Did works to advance public awareness of epilepsy and SUDEP, enhance disclosure of the SUDEP risk between medical professionals and families impacted by seizures, and gain mainstream acceptance and use of seizure detection and prediction devices. They are based in Chicago.
Dravet Syndrome Foundation: The mission of DSF is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families. They are based in West Haven, CT.
Dup15q Alliance: For the past 20 years, the Dup15q Alliance has provided family support and promoted awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome. They are based in Fayetteville, New York.
LGS Foundation: The LGS Foundation is a non-profit organization dedicated to providing information about Lennox-Gastaut Syndrome while raising funds for research, services, and support to improve the lives of individuals living with LGS and their families. The LGS Foundation is based in New York City and provides services and information to thousands of members across the world.
Tuberous Sclerosis Alliance: TSA was founded in 1974 by four mothers coming together to provide fellowship, generate awareness, pursue more knowledge and provide hope to those that shared the common bond of tuberous sclerosis complex. They are based in Silver Spring, Maryland.
SUDEP Aware (Canada): SUDEP Aware is a Canadian charity dedicated to raising awareness and understanding SUDEP, with the ultimate goal of finding its cause(s) and prevention. SUDEP Aware was co-founded in 2008 by Tamzin Jeffs, who lost her sister to SUDEP, and lives with epilepsy, and neurologist and SUDEP researcher Dr Elizabeth Donner of the Hospital for Sick Children in Toronto.
SUDEP Action (United Kingdom): SUDEP Action is a charity based in England that offers support when someone has died as a result of epilepsy; involves families to help effect change; sponsors research and education to prevent future deaths; and captures data across the UK through the Epilepsy Deaths Registry.
Epilepsy Australia: Epilepsy Australia is the national coalition of Australian Epilepsy Associations, raising our voices as one to advance the cause of all Australians living with epilepsy. This organization actively delivers counseling, support and information, and is committed to raising awareness and understanding of the issues faced by those coping with epilepsy.