Today’s story in Give It All You’ve Got comes from Dr. Julia Jacobs-LeVan.
Hollie’s quote — “You get 3 choices in life: give up, give in, or give it all you’ve got” — inspired this series. It speaks to families and warriors most directly, but it resonates just as deeply with the clinicians and researchers who’ve chosen to stay in this fight even when the science is far from settled.
Dr. Jacobs-LeVan is a pediatric neurologist and Director of the Alberta Children’s Epilepsy Program at the University of Calgary, where she also serves as Professor in the Departments of Pediatrics and Clinical Neurosciences and Assistant Dean of Postdoctoral Research at the Cumming School of Medicine. Her clinical and research work focuses on improving diagnosis and care for children with epilepsy, including those living with HH Syndrome. She has served on Hope for HH’s Medical Advisory Board since 2019, and this year stepped into a new role as Chair of the MAB.
Why HH Syndrome fascinates her — and why she stays
“For a clinical scientist, HH syndrome is fascinating. A small extra structure on the hypothalamus, sometimes barely visible on MRI, can have such a profound impact on a child’s development. We now know much more about the wide variety of symptoms caused by HH, but we still do not fully understand how or why they occur. As an epileptologist, I am particularly fascinated by the unique seizures associated with HH, episodes of uncontrollable laughter, and by the extraordinary location of seizure onset, deep within the brain.
But none of these scientific or clinical aspects are the real reason for my work with Hope for HH or my dedication to this cause. What makes this work truly special to me is the people and the connections that have developed along the way.”
What Hope for HH means to her, beyond the science
“Hope for HH is a remarkable example of collaboration between patients, caregivers, and healthcare professionals. The Hope for HH board members have not only been tireless advocates for this rare disease, supporters of the HH community, and fundraisers; they have actively shaped research, co-designed studies, and contributed to the development of treatment guidelines. They have brought together experts from around the world to exchange knowledge, challenge each other, and think together about some of the most complex questions in HH research. Most importantly, Hope for HH has made sure that those of us on the medical and scientific side never lose sight of what matters most: the children and families living with HH syndrome.”
What she’s learned — and what keeps her committed
“As a physician, I have had to learn that I do not always understand the mechanisms behind a disease, that I cannot always fix everything, and that research does not always translate directly into a cure. But in my work with Hope for HH, I have never had to doubt that what we are doing is meaningful to patients and families. I have learned that progress does not always come in giant leaps. Sometimes, small steps taken together toward a common goal can make an enormous difference in the lives of families affected by HH.
That is what keeps me committed to Hope for HH: the science is fascinating, but it is the people, the partnership, and the shared determination to make life better for children and families that make this work truly meaningful to me.”
Thank you, Dr. Jacobs-LeVan, for bringing your science and your heart to this community in equal measure — and for now leading our Medical Advisory Board into its next chapter. This is why we fight.
Inspired by Dr. Jacobs-LeVan’s story? Join the fight for every Hope for HH family. Donate or start your own fundraiser at givebutter.com/2026-hhsyndrome-awareness.
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