Epilepsy is a common disorder (1/100 in the population). It is not “all under control”. (About 1/300 people lives with uncontrolled seizures.) People with uncontrolled seizures live lives of isolation and economic hardship.
Because the Ministry of Health does not recognize epilepsy as a physical disability, people with seizures do not receive the benefits that go to people with other sorts of disabilities.
ABOUT EPILEPSY RESEARCHEpilepsy Research is very active in Ontario, despite our low level of funding. (We get about 1/50th of the research funds that go to stroke research) We are having trouble, however, in getting industry to develop the new therapies we have invented. The “cure” is on the way, but it’s not being commercialized.
ABOUT EPILEPSY CAREExpert care for drug-resistant seizures is very uneven outside of two big urban centers, London and Toronto. These are the only centers that offer seizure surgery. We need an “integrated” system which will allow citizens from rural Ontario to benefit from the treatment options offered in London and Toronto.
ABOUT EPILEPSY ONTARIOEpilepsy Toronto is a non-profit “umbrella” organization that promotes and maintains the regional epilepsy agencies in Ontario.
ABOUT SUDEPDeath in people with of epilepsy is much more common than people know. It is called “SUDEP”, and it often occurs in young people with poorly controlled seizures. We need new therapies to improve seizure control and prevent SUDEP.
ABOUT THE REGIONAL EPILEPSY AGENCIESThe regional epilepsy agencies are non-profit organizations that provide information, counseling and support for people living with seizures and for their families. They play an important role in epilepsy care, but receive no federal or provincial funding.
ABOUT THE CANADIAN EPILEPSY ALLIANCEThe Canadian Epilepsy Alliance is a nation-wide, non-profit organization that promotes dialog and coordination between the different regional agencies across Canada.
ABOUT THE CANADIAN LEAGUE AGAINST EPILEPSYThe Canadian League Against Epilepsy is an organization of doctors and scientists devoted to improving epilepsy care.
EPILEPSY CURE INITIATIVE (ECI)Is a not for profit incorporated organization founded by parents of a child with uncontrolled seizures, inspired by life experiences and fuelled by a burning desire to make a positive difference for people with epilepsy here and now. ECI is dedicated to creating awareness and understanding of epilepsy, bringing an end to misconceptions and fear of the disorder, as well as to discrimination against people with epilepsy. ECI is also dedicated to promoting medical dietary therapies (ketogenic diet), funding epilepsy research, and educating the public about the urgent need for increased efforts in epilepsy research to advance new treatments that offer better seizure control and fewer side effects. As well, ECI is advocating for improvements in epilepsy care.