Chapter Name: Canadian League Against Epilepsy
Report By: CLAE

Publications:

• CLAE Connections – our league newsletter – will now be published monthly instead of three times a year.
• Manuscript published in Canadian Journal of Neurological Sciences: Position Statement on the Use of Medical Cannabis for the Treatment of Epilepsy in Canada.
• French translation of the ILAE classification of seizure completed
• Ongoing translation of the Pediatric Epilepsy Training Course

Summary of Activities:

In 2019 and 2020 there were 98 and 93 Full CLAE members, respectively.

Scientific and Educational Meetings

• The 2019 CLAE Scientific meeting and CERI satellite symposium were great successes. There were 173 attendees. Topics included Neuromodulation in epilepsy, Epilepsy in the prairies, Connexins and pannexins, Impact of childhood epilepsy, Biomarker in epilepsy, Advanced imaging in epilepsy, and What is a seizure.
• The 2020 Regional NAEC was scheduled to take place in Toronto. However, because of the pandemic it was held virtually. Organizing this meeting took great effort on behalf of the members and support staff at the ILAE and CLAE. This meeting was also a great success. There were 526 participants. Topics included Epilepsy: a personal and global perspective, Epilepsy In North America, Epileptic seizure prediction, Epilepsy surgery, amongst other topics.
• The 2021 CLAE Annual Meeting will be held virtually from September 24-26, 2021. It was originally scheduled to be held in Kelowna (BC) and it will be held there in 2022.

Awards

Two Canadian Epilepsy Fellows were awarded the 2020 UCB-CLAE fellowship.

Two Canadian Epilepsy Fellows were selected to attend the J. Kiffin Penry MiniFellowship Program.

We awarded our usual trainee/allied health awards for best publications (fellow award, grad student or medical student award, resident award and allied health student award).

Fundraising

• CLAE Fundraising dinner in honor of Jean Gotman and Marilyn Jones-Gotman to be held on May 8, 2020 (donations will be allocated to the creation of a CLAE epilepsy research award): $45K has already been raised for the scientific event and $42.5K for the CLAE fundraiser.
• The 2019 Fun run held at the CLAE Scientific Meeting raised $4417.
• Origami for epilepsy fundraiser by Dr. Dang Nguyen’s children raised $2500 (divided equally between the CLAE and Canadian Epilepsy Alliance).

Advocacy

• Letter to Federal Minister of Health on the occasion of the 110th anniversary of the ILAE.
• Letter to Federal Minister of Health regarding legislation in the United States that permits the importation of Health Canada-approved medicines for U.S. patients.
• Letter to Ministry of Health to support the Epilepsy Action Plan on the agenda of the 146th WHO Executive Board (EB) meeting (February 3-8, 2020 in Geneva). The Decision on Epilepsy was eventually adopted by the WHO Executive Board.
• The adoption of the Decision on Epilepsy at the 146th meeting of the WHO Executive Board was a key development that demonstrated outstanding support to epilepsy by more than 80 Member States with co-sponsorship by 37 Countries.
• Letter to Federal Minister of Health to request their support for the active development of the ‘Intersectoral Global Action Plan on Epilepsy and its Synergies with Other Neurological Disorders’ at the 73rd World Health Assembly. On November 12, 2020, member States eventually approved unanimously a Resolution to develop a 10-year Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders.
• Women with Epilepsy Task Force has been created by Dr. Ester Bui to help increase recruitment in the North American Pregnancy Registry.

Challenges:

• Due to the COVID pandemic, sponsorship funding has been noticeably, and understandably, reduced. Therefore, fundraising to support ongoing initiatives and meetings will be a challenge.
• Recently, one of our colleagues, Dr. Jose Tellez-Zenteno passed away unexpectedly, leaving a very large patient population in Saskatchewan without specialized epilepsy care. The CLAE membership is pulling together to find ways (via telehealth) to provide his patients care until a new epileptologist is recruited.
• Seizure monitoring units are being closed due to the COVID-19 pandemic, leading to longer wait times.

Future Plans:

• Creation of the Canadian Epilepsy Teaching Network to promote and standardize epilepsy education for all interested physicians in Canada (e.g., fellows, residents, general neurologists)
• Establish an Epilepsy Fellowship Task Force, to be chaired by Dr. Kritin Ikeda.
• The Jean and Marilyn Jones Gotman Epilepsy 2020 scientific meeting and fundraiser initially scheduled for May 2020 was postponed to 2021 due to the COVID pandemic. Unfortunately, it has again been postponed (27-28 May 2022).
• The CLAE is in the process of organizing a Warren Blume Scientific day and fundraising dinner in 2022.
• The CLAE is in the process of establishing a Juhn Wada lectureship.
• Creation of a practical guide for drug shortages based on available literature
• Creation of National Guidelines for the care of epilepsy
• Creation of a CLAE Epilepsy Fellowship Curriculum
• Creation of George Savoy Award for Research (details TBA)

Officer Election Date: September, 2019