DONATIONS AT WORK HIGHLIGHTS 2025/26
Alberta Children’s Epilepsy Program
Community support continues to fuel exciting advancements in epilepsy prevention, screening, early intervention, treatment options and more personalized care plans for kids and families at the Alberta Children’s Hospital.
Through the Alberta Children’s Epilepsy Program (ACEP), experts are improving seizure diagnoses and monitoring, offering new therapies and programming, and developing educational tools to increase confidence and reduce anxiety around epilepsy.
Here are some highlights from the last year:
Diagnostics
Facing an increase in patient numbers due to population growth, the ACEP team has worked hard to develop and implement new streamlined pathways of care.
The ambulatory electroencephalogram (EEG) program is now fully up and running, allowing children to have long-term EEG monitoring — along with video recording — done in the comfort of their own homes rather than staying 24-plus-hours in hospital.
“Establishing this program involved a lot of pioneer work, as it’s the first diagnostic approach of its kind in Canada,” says ACEP director, Dr. Julia Jacobs-LeVan. “This has allowed us to double our available diagnostic spots.”
The team also developed a specialized pathway to EEG for babies with a neonatal brain injury. As some of these babies are likely to experience seizures, the ACEP team is taking a proactive approach in screening to either identify epileptic activity right away so the child can begin treatment or collect helpful baseline data and give families peace of mind that there is no current seizure activity. Through this program, the team has been able to open three new EEG spots per week specifically reserved for infants at risk of epilepsy which has reduced the wait time from approximately four months to less than two weeks.
DID YOU KNOW?
Last year, there were 1,891 children with an epilepsy diagnosis receiving care at the hospital.
Treatment
For children whose seizures do not respond to conventional pharmacological treatments, the ACEP team continues to provide opportunities to participate in clinical drug trials. This gives families access to medications that would otherwise not yet be available to them and ultimately, new hope.
The team also completed a quality improvement project around the Ketogenic Diet program, partnering with several healthcare and industry partners to increase access for eligible kids. The high-fat, low-carbohydrate diet is an alternative treatment for drug-resistant epilepsy and can be highly effective in controlling seizures.
As well, a new transition clinic was established for 17-year-old patients in collaboration with the Epilepsy Association of Alberta and adult epilepsy services. This clinic gives patients the opportunity to meet their future physician at the Alberta Children’s Hospital as they prepare to move out of pediatric care and into the adult healthcare system.
Finally, surgery using specialized donor-funded technology continues to be a life-changing option for some families. The ACEP team has been able to expedite the pathway to surgery for children deemed strong candidates, sparing them the often-lengthy trial-and-error medication odyssey.
Last year, 47 children — including Noah Tesfaye Malenfant — underwent surgery to reduce or stop their seizures.
In the spring of 2025, four-year-old Noah began experiencing tics — soon confirmed to be seizures — which were impacting his sleep, memory, speech and mood. An MRI revealed that a benign tumour in his brain was the cause.
A few weeks later, pediatric neurosurgeon Dr. Walter Hader successfully removed the tumour and Noah has been seizure-free since.
“We are deeply grateful to everyone — from the donors to the medical staff — who made Noah’s fast surgery possible. This gift of timely care has truly changed our lives.”
— Hiwot Regasa, Noah’s mom
Noah in the hospital in the spring of 2025
DID YOU KNOW?
Last year, there were five new clinical trials started and 308 children who were able to participate in at least one open trial through the hospital.
Research and Education
ACEP continues to be a popular draw for international epilepsy fellows, who have come to Calgary from the United States, Italy, the Philippines and more. The program — which also provides increased access to specialized care for patient families — is already subscribed into 2028.
Meanwhile, efforts to support families of children with epilepsy through knowledge, understanding and confidence continues. Knowledge2Empower, an interactive training platform developed by the ACEP team, has been translated into French, Spanish and German.
Among the resources available are educational videos that explain what an EEG is, why kids have them, what happens during the test and that the electrodes don’t hurt. The videos are now approved as the standard communication for all families whose children will have at least one EEG through the hospital.
“Because of the educational resources we’ve created, families have told us they better understand epilepsy and how seizures can change. Not knowing these things can cause a lot of stress, and an analysis of our patient education outcomes shows a clear reduction in anxiety for these families.
— Dr. Julia Jacobs-LeVan, ACEP Director
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