Author Archives: Trevor Gordon

The 2025 #IAM1IN100 CAMPAIGN

March 2, 2025

 

We are bringing back the #Iam1in100 campaign this March.

Download the material below and help expand the representation of what it means to live with epilepsy.

If you have epilepsy, download the sign that says “I have epilepsy and…” In the blank space provided, you can write about how you’re feeling or how you’re handling epilepsy. You can also write about your hobbies, interests, skills, and life beyond epilepsy.

If you know someone with epilepsy, download the sign that says “Someone I care about has epilepsy and…” In the blank space provided, you can write about their hobbies, interests, skills, and life beyond epilepsy.

The campaign highlights the range of experiences of living with epilepsy and that people with epilepsy are more than just their epilepsy.

 

Here’s how you can participate

Download and print a sign
Fill in the blank space
Take a photo while holding the sign
Upload your photo to social media using #Iam1in100 (for people with epilepsy) and #1in100.
Feel free to tag us @epilepsysco on Twitter & Instagram & Facebook or use the hashtag #epilepsysouthcentralontario

Material

 

English
“I have epilepsy and” sign (8.5″x11″)
“Someone I care about has epilepsy and” sign (8.5″x11″)
Small poster (8.5″x11″)
Large poster (11″x17″)

Français
«J’ai l’épilepsie et”» tableaux (8.5 x 11 po)
«Une personne qui me tient à coeur souffre d’épilepsie et» (8.5 x 11 po)
Petite affiche (8.5 x 11 po)
Grande affiche (11 x 17 po)

TEVA-CLOBAZAM 10 mg Tablets Update

December 19, 2024

Following a meeting with Anthony Lostracco, Manager of the Drug Shortages Unit at Health Canada this past Friday, the Canadian Epilepsy Alliance has learned that Health Canada is in contact with Teva Canada about the shortage, its future resolution, and the extent to which Health Canada may be able to assist.

Our community member Rebecca Boland has also just informed the Canadian Epilepsy Alliance that Teva Canada has helped secure a supply via a specialty pharmacy to end the expected shortage.

This is the best outcome for Rebecca and her family, who expressed relief.

Of course, we are aware that the situation in which Rebecca found herself may not be isolated, so we remain in contact with our 26 local Associations to try and learn the details of others who may be in the same boat.

For our part, the Canadian Epilepsy Alliance has extended an offer to Teva to support a strengthened flow of communications with Canadians diagnosed with or caring for someone with epilepsy.

We have advised that we will continue to pay attention as updates become available.

Click For the Teva Canada Statement

MEDIA ROUNDUP (Click below links for article/video)

Ontario family says drug-maker helped them find epilepsy medication amidst ongoing shortage

‘We can’t search forever:’ Drug shortage leaves Ontario family scrambling to find epilepsy medication

Medication shortage concerning some epilepsy patients

Some epilepsy patients worry their seizures will return amid medication shortage

Epilepsy medication concerns

EPILEPSY ADVOCACY TRIUMPHS IN ONTARIO: MOTION 68 CALLS FOR COMPREHENSIVE EPILEPSY POLICIES IN SCHOOL

November 24, 2023

 

In a significant leap forward for epilepsy advocacy, the Legislative Assembly of Ontario has passed Motion 68. Introduced by MPP Natalie Pierre, this motion calls on the Ministry of Education to institute new policies across all Ontario school boards regarding the administration of epilepsy rescue medications in schools. The motion, that was passed at Queen’s Park on November 15th, will require Ontario school boards to implement a comprehensive epilepsy policy, which includes training to teachers and staff on the administration of emergency epilepsy medication to students having an epileptic seizure to promote a safe and healthy learning environment for all.

The introduction of Motion 68 represents a collective effort by passionate advocates and supporters within the epilepsy community, emphasizing the commitment to creating an inclusive and supportive educational landscape. The motion addresses a critical need for standardized protocols and knowledge dissemination to ensure the well-being of students living with epilepsy.

“When our daughter Emma’s school staff expressed concern about Emma’s participation in an upcoming trip due to the possibility of having to administer epilepsy emergency medication, we knew we had to advocate for change.  We had to ensure that all students living with epilepsy were granted the same opportunities as other students.  There is a lot of stigma associated with epilepsy, and awareness and education are imperative”, says Emma’s mother and epilepsy advocate Monica Diaz-Greco.  “After contacting our Provincial Member of Parliament Michael Ford, we also reached out to our local epilepsy agencies.  With their support and the support of MPP Natalie Pierre, who sponsored the motion, we are thrilled to see this motion pass. This is a victory for all people living with epilepsy in Ontario”

This groundbreaking motion is a testament to the dedication and collaborative spirit of all those involved in pushing forward the cause of accessibility and equity in the educational sphere. Epilepsy Ontario,  Epilepsy Toronto, Emma IS and the Greco family would like to express sincere appreciation for the unwavering commitment of MPP Natalie Pierre and her team, as well as all the supporting MPPs who voiced their endorsement for Motion 68.

PDF Full Press Release

Epilepsy Organizations Unite to Support Trans and Nonbinary Individuals with Epilepsy During Pride Month

June 29, 2023

FOR IMMEDIATE RELEASE

Epilepsy Organizations Unite to Support Trans and Nonbinary Individuals with Epilepsy During Pride Month

Concord, ON – June 29, 2023 – Epilepsy Ontario, Epilepsy Ottawa and Epilepsy Southwestern Ontario are proud to announce a new collaboration aimed at addressing the unique healthcare challenges faced by trans and nonbinary people living with epilepsy. In celebration of Pride Month, the organizations have jointly developed the Epilepsy, Hormones, & Reproductive Health strategy sheet, a comprehensive resource designed to empower and support this underserved community.

Living with epilepsy is a complex journey, encompassing medical, social, and emotional challenges. Transgender and non-binary people, who already navigate additional hurdles and discrimination in their daily lives, often encounter distinctive barriers when seeking proper care and support for epilepsy. Recognizing the urgent need for specialized resources, Epilepsy Ontario, Epilepsy Ottawa and Epilepsy Southwestern Ontario joined forces to fill this crucial gap.

The Epilepsy, Hormones, & Reproductive Health Spark sheet serves as a vital tool to navigate the intricate relationship between anti-seizure meds, gender-affirming care, hormone therapies, and other crucial aspects of reproductive health. By addressing these unique concerns head-on, this collaborative effort aims to foster inclusivity, improve health outcomes, and enhance overall well-being.
The Epilepsy, Hormones, & Reproductive Health strategy sheet is available for free download on the websites of Epilepsy Ontario, Epilepsy Ottawa and Epilepsy Southwestern Ontario ensuring accessibility and widespread availability. A French version will be available soon. Through this effort, the organizations aim to advocate for a more inclusive healthcare system and inspire other organizations to follow suit.

Click here to view the Epilepsy, Hormones, & Reproductive Spark Sheet, 

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Contact:
Trevor Gordon
Epilepsy Ontario
[email protected]

Background: One in 100 people in Canada have epilepsy, 65 million worldwide. It is one of the most common neurological conditions, second only to migraines. Rampant misinformation about epilepsy leads to bullying at schools, blatant discrimination in the workplace and social marginalization. Many people with epilepsy hide their medical condition for fear that revealing their epilepsy will cause them to lose their job or friends. Amidst this silence, the myths about seizure disorders continue unchallenged and this untenable situation remains. Epilepsy Ontario enhances the lives of people who are affected by epilepsy and seizure disorders by providing a network of services that educate, support and build community awareness.