Epilepsy Action Day at Queen’s Park was a valuable opportunity for representatives of Epilepsy Ontario and Epilepsy Cure Initiative to meet with Members of Provincial Parliament (MPPs) and government officials to discuss key concerns for people living with epilepsy. The focus of the day was to discuss the following three messages:
- Epilepsy needs to be a priority area for research at the new Ontario Brain Institute and support needs to be continued for the development of an Ontario Brain Strategy.
- With our already stretched provincial resources, our health care system needs to optimize existing capacity by developing evidence-based standards and guidelines for the diagnosis and treatment of epilepsy and applying a model of chronic disease management.
- 30% of patients don't respond to currently available drugs and still experience uncontrolled seizures, highlighting the need for new anticonvulsant drugs. As new treatments for epilepsy become available in Canada, the Ontario government must ensure its citizens have access to new treatment options, with the chance to better control their seizures and improve their quality of life.
Delegates were split into teams and participated in over 30 meetings throughout the day including:
- Minister Madeline Meilleur (MCSS)
- Minister John Milloy (MTCU)
- Minister Margaret Best (MHP)
- Premiers Office:
- Dan Carbin, Senior Advisor Health Policy
- Joanna Furse, Senior Advisor, Children’s, Social and Consumer Services Policy
- Political Staff:
- Tim Smitheman, Senior Advisor, MHLTC
- Sophia Ikura, Senior Policy Advisor, MHLTC
- Steve Barnes, Senior Policy Advisor, MRI
- Deputy Ministers and Assistant Deputy Ministers:
- DM George Ross and ADM Bill Mantel (MRI)
- ADM Laurie LeBlanc (MTCU)
- ADM Kathryn Pagonis (MHLTC)
- Christine Elliot, PC Health Critic
- NDP Caucus hosted by France Gelinas, NDP Health Critic
- Phil McNeely, PA to MHLTC
- Bas Balkissoon, PA to MCSS
- Steve Peters, Speaker of the House
At the end of the day MPPs and government officials as well as invited guests attended the reception. Margaret Maye, President of Epilepsy Cure Initiative opened the event and Hon. Laurel Broten, Minister of Children and Youth Services gave welcoming remarks. Christine Crosbie, a member of Toronto’s epilepsy community followed as the key note speaker and Dr. Mac Burnham closed the event.
A Follow up from the meetings is underway and plans for next year are being discussed as the day was a great success!
TORONTO, March 2 /CNW/ - Today, epilepsy organizations across Ontario, led by Epilepsy Ontario and Epilepsy Cure Initiative, launched Epilepsy Awareness Month by hosting Epilepsy Action Day at Queen's Park. Members from the epilepsy community met with MPPs to discuss key challenges facing the 140,000 Ontarians living with the disorder.
"Today's activities provided a rare opportunity for us to raise awareness with government about the issues within the epilepsy community," said Dr. Mac Burnham, board member, Epilepsy Ontario and director, University of Toronto Epilepsy Research Program. "Our meetings with government representatives highlighted the need for research, standards of care and disability support, and ultimately, our request for an action plan to address these issues."
Epilepsy, the second most common neurological condition after headache, is a seizure disorder caused by sudden bursts of electrical energy in a person's brain. Up to one-third of people living with epilepsy do not have seizure control, severely impacting their independence, productivity and overall quality of life. The disorder can cause significant challenges, including difficulty finding employment, loss of driving privileges, cognitive decline and memory impairment and higher mortality rates. People living with epilepsy also live with a significant social stigma associated with seizures.
"Like others with disabilities, people with epilepsy often face barriers to their basic human rights and freedoms," said Margaret Maye, president, Epilepsy Cure Initiative. "Through advocacy efforts, such as Epilepsy Action Day, we strive to invoke change at the governmental, legal, social, economic and institutional levels."
Epilepsy Action Day will culminate in a reception at Queen's Park, featuring remarks by Christine Crosbie, a Torontonian living with epilepsy.
"I am pleased to be able to share my personal story to help bring awareness and understanding to the Ontario government, and advocate for those who feel epilepsy is being kept in the shadows," said Christine Crosbie. "By addressing the gap in support and raising awareness, we can better assist epilepsy patients and their families in their efforts to live well with this disorder."
About Epilepsy Ontario
Epilepsy Ontario (EO) is a registered charitable non-profit non-governmental health organization dedicated to promoting independence and optimal quality of life for children and adults living with seizure disorders, by promoting information, awareness, support services, advocacy, education and research. Through a network of local agencies, contacts and associates, Epilepsy Ontario provides client services, counselling, information and referral services, education and advocacy services for children and adults living with seizure disorders, and for their families, friends, co-workers and caregivers. EO offers long-term programmes to raise standards of care and support medical research into seizure disorders. EO hopes to improve public awareness and education through the Provincial Resource Centre, publications, the EO web site, conferences, and outreach programs.
About Epilepsy Cure Initiative
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 to bring an end to myths, misconceptions and fear of both seizures and the disorder, as well as to discrimination against people with epilepsy. ECI is also committed to promoting medical dietary therapies, supporting epilepsy research and informing 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 a more effective and improved formalized epilepsy care system being brought to Canada.
Thomas and Margaret Maye of the Epilepsy Cure Initiative celebrate a successful day at Queen's Park advocating for government support for issues faced by the epilepsy community. (CNW Group/Epilepsy Ontario)