In 1956, a group of parents from the Toronto area rallied together to form a voice for epilepsy in the province. The seed they planted eventually grew to become a registered health charity – Epilepsy Ontario.
After a rocky decade of slow and uneven growth, the non-profit organization began drawing attention from the provincial government. Ontario’s Ministry of Health offered support by appointing an executive director for the organization in 1967. The arrangement however was short-lived. Eight years later, Epilepsy Ontario was back where it started – scrambling for support.
It was time to reorganize.
The board of directors formed a task force in 1976 and divided the province into 19 manageable regions, each one primed to eventually become an autonomous agency. Only when unavailable at local agencies was membership offered at the provincial level.
The new system worked. Five years later, Epilepsy Ontario was receiving funding from the United Way as an official chapter region. This was only the beginning.
The Road to Success
In 1982, Epilepsy Ontario secured its first grant from the Ontario Trillium Foundation, a government agency that offers about 1,500 grants to community-based non-profit charities every year. Over the next three years, the Epilepsy Ontario team began to grow. They hired fieldworkers and fund raisers to help reach more ethnicities in Ontario’s increasingly diverse population.
Epilepsy Ontario won the Trillium Foundation’s approval again in 1989. The five-year grant of $1,587,500 triggered an explosive growth. Agencies thrived in their regions and offered a myriad of services throughout the province including:
- support groups and counselling services, particularly for newly diagnosed patients or parents of a newly diagnosed child;
- a resource library with posters, pamphlets, brochures and videos on all aspects of epilepsy from medication to employment;
- educational seminars, including Kids on the Block (the educational puppet program for school-aged children);
- medical and psycho-social resources that encouraged referrals to local agencies,
- advocacy to empower and protect the rights of people with epilepsy, and
- Sharing – a newsletter with information on fund raising, education, and current programs and services offered at the chapter level. (Epilepsy Ontario now offers the e-newsletter, Voices of Epilepsy, instead of Sharing.)
In short, they embodied the very objective that holds true for Epilepsy Ontario today: to provide support, education and information for agencies to serve people with epilepsy, their families, friends, associates, employers and communities.
Where are we now?
Today, Epilepsy Ontario has 16 epilepsy agency affiliates and partners. Of these, 13 have boards of directors while the remaining three operate through volunteer contacts.
A Provincial Council governs Epilepsy Ontario and meets annually with appointed agency members. This council elects an Executive Committee, which is led by volunteers. Epilepsy Ontario’s executive director supports the Committee’s working board to oversee the day-to-day operations.
Over the years, the structure and management may have evolved into an organization much greater than the founding group of parents could have imagined. Through it all however, our mission remains unchanged:
Epilepsy Ontario exists to promote independence and optimal quality of life for those living with seizure disorders by promoting information, awareness, support services, advocacy, education and research.