Innovator Spotlight on Epihunter: Tim Buckinx

Tim Buckinx of EpiHunter with the world "Creative" imposed on the side of his head.
Tuesday, September 3, 2019

Tim Buckinx is the founder of Epihunter, a Belgian company devoted to developing digital systems for detecting, tracking and signaling epileptic seizures in real-time using EEG wearables. In 2019, Epihunter was awarded a commercialization grant from the Epilepsy Foundation to help get their product to market. Tim is also personally connected to epilepsy.

The Epilepsy Foundation's Senior Director of Innovation Sonya Dumanis PhD sat down with Tim to learn a little bit more about his experience with epilepsy and what motivated him to create Epihunter.

What is your personal connection to epilepsy?

My son has Ring20 epilepsy. For the first five years of his life, everything seemed to be perfectly normal. Our son was an insatiable tree climber, a very happy and active young boy. Our only clue that something might be off was that he regularly had bad nightmares.

And then, one day, we were in the kitchen making dinner, and in the next room, our son began to shake all over. I had no idea what was happening. My wife, who had learned about seizures as an educator, immediately recognized what was happening.

What happened after his first seizure?

Everything escalated. Our previous life went on hold and we went into a survival mode. Very soon he was having a seizure every 10 minutes, day and night. We would plan our grocery store trips around those 10-minute intervals. We would wait in the car for his seizure to end before rushing into the grocery store. At around the 10-minute mark, I would find a quiet place in the store for him to have his next seizure. At night, his seizures came with night terrors and hallucinations. My wife and I would take turns sleeping in his bed to comfort him and make sure he was ok.

We tried at least 7 different anti-seizure medications in every combination imaginable.

There is so much uncertainty in this journey, because you never know if you are making the right decision.

Are we reporting the right information? Did we miss anything? Did a seizure look different? Is he more alert?

There are no objective criteria that outline the process. Should we switch the medication? Should we increase the dose? How fast should the dosage be increased? What is the magic combination?

My wife and I would spend the hour-long ride to the doctors debating the answer to the question, “So, how’s it going?” that we would inevitably be asked. After the visit, we would spend the hour-long ride back from the hospital debating whether our input drove the right decision.

How is he doing now?

When he was 10 years old, we were able to get to the point where he was only having 20-minute-long absence-like seizures (technically, they were called focal onset impaired awareness seizures) about 1-4 times a day. These seizures look like daydreaming or staring spells, where he is unaware of his surroundings.

Our friends and relatives kept saying that, “This is so great. Look at how far he has come. You can't see anything wrong anymore!”

Sure, these seizures don't look that terrifying, but their impact on his life are huge.

He’s having long, silent seizures and loosing awareness of his surroundings, multiple times a day, every day. This is not ok.

How did your son’s experience inspire you to start Epihunter?

We would regularly talk about his epilepsy during our father-son bedtime conversations. A common recurring theme was that people at school were always angry at him. They didn’t understand why he wouldn’t just pay attention, do the test, answer the question that was asked, participate in class, etc. He wanted there to be a way to let people know that he wasn’t ignoring them on purpose. And on March 15, 2015, he asked, "Dad, you work in digital, can you create a light that turns on when my brain switches off?"

That simple question is the inspiration for our company. I realized that the biggest change to his life wouldn’t be a magic pill but the digital technology that normalizes his life with this condition. By turning on a light, his difficult-to-notice seizures become visible.

His teacher would know when to interact and when to pause. It could create understanding, and when needed, additional time for taking a school test. After exploring the technology needed and learning that many families worldwide struggle with the same needs, I quit my job as the global digital lead for Bose and founded Epihunter.

What is Epihunter about?

I regularly compare what we do with glasses. Eyeglasses were invented in the 1200s in Italy. And this technology never cured our eyes, but more than 50% of the world’s population wears them. Why? Because they do what they need to do, remove the impact of bad eyesight on daily life.

I strongly believe that the digital technologies around us can have the same impact as glasses to the lives of people with neurological conditions and specifically for those with epilepsy. For the first time ever, we have minimally invasive wearables that can look inside the brain, throughout the day. At Epihunter, we externalize the state of the electrical activity of the brain. The algorithms in our smartphone app analyze the data from a slim EEG headband in real-time to detect silent, difficult-to-notice, absence-like seizures.

When such seizures occur, we have the smartphone perform an action that changes the moment. For children in a classroom, we turn on the smartphone light. With the smartphone being upright on the child’s desk, the teacher notices the light turning on and can react accordingly. We eliminate the misunderstandings and frustration by providing information and clarity. At home, the smartphone can make a sound to alert the parent, or the smartphone can start automatically recording the seizure from start to end for the doctor to see.

What advice do you have for other parents going through their own seizure journey with their children?

Don’t lose hope. And yes, your normal will be redefined, but force yourself to still enjoy the small moments – especially those split moments where you forget about epilepsy. They are so important to keep moving. Find information and find each other. We are more than 65 million families worldwide.

Anything else that you want to add?

The Epilepsy Foundation has been incredibly helpful.

The Epilepsy Foundation’s website, epilepsy.com, is a great source of crucial information.

It helped my wife and me to understand the terminology doctors were using.

The Foundation was also incredibly helpful to us as a startup. They helped navigating the epilepsy community through both their professional and family network. When we were in Boston, the Epilepsy Foundation of New England was instrumental in helping us run an absence focus group.

With the New Therapy Commercialization Grant that we received, we are able to partner with Boston’s Children to validate the information we track as a potential solution to inform clinical decision making for neurologists. Epihunter is still a small startup, but we have a CE-certified product currently available in Belgium, the Netherlands, and the UK. We won’t stop tackling the challenges our community faces. I do this for my son and for families like ours.

Related Links

Authored by: Epilepsy Foundation Research Team on 9/2019
Reviewed by: Andres Kanner MD and Elaine Wirrell MD on 9/2019

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The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
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