Author Archives: Trevor Gordon

We need your voice to shape the future of epilepsy research

October 16, 2019

The Ontario Brain Institute’s (OBI) epilepsy research program (EpLink) is looking to better understand the questions Canadians have about epilepsy and seizures. These questions could be about causes or diagnosis, treatment, managing day-to-day life or managing co-existing conditions related to epilepsy.

Co-existing conditions related to epilepsy include:

Rett Syndrome
Cerebral Palsy
Down Syndrome
Tuberous Sclerosis
Depression, anxiety, or other mood disorders
Neurodevelopmental disorders

If you have epilepsy or experience seizures, or if you care for or work with someone who does, we want your help in setting the priorities for epilepsy research. Your answers to this survey will help researchers and research funding organizations better identify what is important to people living with epilepsy and/or seizures and incorporate their priorities when planning future projects.

This priority setting process follows the methods of the James Lind Alliance (UK) and is being funded by OBI. It is led by a steering committee that includes patient advocates, patient advocacy group representatives, clinicians, and healthcare professionals working with persons who have epilepsy and/or seizures.

This is an opportunity for you to lend your expertise from your own personal/professional experience, and have your say in setting epilepsy research priorities.

Please complete this short questionnaire at: http://www.braininstitute.ca/epilepsy-psp

This survey is open from October 2019 to January 2020– contribute your voice today!

Provincial Budget

January 15, 2019

In Ontario, 95,000 people live with epilepsy, and every year thousands of them make unnecessary trips to the Emergency Room, adding to the province’s Hallway Healthcare crisis and costing the healthcare system millions of dollars. It doesn’t need to be this way.

Epilepsy Ontario’s has sent a pre-budget submission to the provincial government, asking for $11 million dollars over 4 years, province-wide, to fund epilepsy education programs at Community Epilepsy Agencies. This would allow local agencies to continue and expand their education programs, including seizure first aid and when to go, and not to go, to the ER following a seizure. We would also be able to provide education programs in those parts of the province without a local agency.

We believe that the cost savings through reduced Emergency Room use will more than pay for this program. We have also requested an additional investment of $1 million per year for Community Epilepsy Agencies to assist those individuals and families who have more extensive needs, such as mental health issues, to manage their condition and live well in the community.

You Can Help

You can show your support for epilepsy education program funding by:

Sending a short, pre-written letter to the Health and Finance Ministers
By contacting your local MPP (not sure who your MPP is? Click here)

Epilepsy Ontario Launches #EpilepsyElection Campaign to Raise Awareness During 2018 Provincial Election

May 14, 2018

May 14, 2018 Concord, ON- Epilepsy Ontario has launched a new awareness campaign to coincide with 2018 provincial election, hoping to gain attention from all parties for the need for epilepsy education and support program funding.

Called #EpilepsyElection, the campaign encourages people living with epilepsy and their families to get in touch with their local candidates and the major party leaders to express their support for programs run by Ontario’s Community Epilepsy Agencies and the need for provincial funding to sustain them.

“Over 90000 people in Ontario live with epilepsy and community education and support programs are a key component of seizure care plans,” said Drew Woodley, Director of Government Relations with Epilepsy Ontario. “Yet Ontario’s Community Epilepsy Agencies deliver these programs without core government funding. This leaves these programs at risk and parts of the province under-served. Candidates and leaders from all parties need to understand the importance of education and support programs and the best way to do that is by hearing from people living with epilepsy.”

Despite the fact that nearly 1-in-100 people in Ontario live with epilepsy, and community education programs for other neurological conditions have received significant government investments, funding for epilepsy community programs has not been forthcoming.

“Epilepsy Ontario and the province’s Community Epilepsy Agencies have made a compelling case for education and support programs. These programs help people better understand and manage their seizures. They reduce unnecessary hospital use. They address the challenges people face at work or in the classroom while living with seizures. Yet, these programs still aren’t funded,” said Woodley. “Our hope is that when candidates hear from people living in their communities during the election about the need for these programs, they will start to take the issue more seriously during the next government.”

The campaign provides resources for individuals to engage their local candidates through social media, email, and at debates, building on the work Community Epilepsy Agencies have been doing through candidate questionnaires and in person meetings.

For more information on #EpilepsyElection, visit www.epilepsyontario.org/election.

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For more information contact:

Drew Woodley, Director of Government Relations, Epilepsy Ontario

416-579-5028 [email protected]