A simple question at bedtime from his young son led Tim Buckinx to leave his current job and set up a digital health company, combining his digital know-how with a drive to help his son and others like him. Having a rare disease himself and having benefitted from clinical trials, Tim firmly believes in the power of collecting data and insights to advance therapies and treatments

RARE entrepreneur series: meeting the beating hearts behind the RARE brands

Epihunter is a pioneering digital therapeutics company focused on enabling people with brain disorders to participate more fully in society. Their solutions apply real-time AI to third-party wearable EEG for real-time digital interventions reducing the conditions’ daily life impact while generating real-world data for better diagnosis, treatment and new therapies. The company has created and clinically validated a beachhead for absence epilepsy which is being commercialized in Europe, the UK & Australasia. Next to this, it is setting up co-development collaborations for a future product pipeline of 15 products in epilepsy and 4 other brain disorders.

1.

What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

Our story starts when our son was six years old. He was a very active boy, climbing trees and asking questions about everything in the world around him. Yet, in a matter of a few weeks, he started to have epileptic seizures every 30 minutes, at nights these would happen alongside hallucinations. Our family went into survival mode and after some time he was diagnosed with the refractory epilepsy syndrome r(20). After many different cocktails of medications his seizures became less visible to outsiders and less frequent. They would mostly look like daydreaming. We unfortunately learned that this did not change the emotional, social and financial impact of epilepsy on our family.

On March 15th 2015, during one of our bedtime conversations, my son, then nine years old, said “Papa, you work in digital, can’t you create a light that turns on when my brain switches off? Then my teacher won’t be angry at me any more because she can see my seizures”. This was an epiphany moment for me where everything that had happened to our family and my professional career leading digital strategic teams came together. It took me another year to do initial research and to convince my wife it was a good idea to leave my job behind to start a digital health company.

2.

How does your business benefit the rare disease community?

Our mission is to enable people with brain disorders to participate more fully in society. I regularly compare it to wearing glasses. Glasses were invented in 1290 in Pisa, Italy and despite many people having used them for hundreds of years, they have never cured anyone’s eyesight. So why do we wear them every day? Because glasses take away the impact of poor eyesight. They allow people with poor vision to drive a car, have a job and look into someone’s eyes 🙂 Without these glasses, people with poor eyesight would live on the edge of society. What if digital technologies can do the same thing for people with a brain disorder?

The epihunter team built a digital platform that combines wearable EEG (in a slim, comfortable headband) with real-time artificial intelligence (mathematical computer programme) to deliver digital interventions that take away the impact of an event (for instance an epileptic seizure) in real-time and generate real-world data for faster diagnosis, improved treatment follow up, and to provide insights for potential new therapies in the future. This product is available today for people with absence seizures. We’re working hard to add algorithms and digital interventions for additional epileptic seizure types and for other brain disorders.

3.

What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

Digital health brings two very different worlds together: on one side the world of digital technologies using a continuous flow of small iterative steps to learn and improve, driving innovation forward at a fast pace. And on the other hand, the world of healthcare which is very rigid, highly regulated and complex to navigate. There is hardly any reimbursement for digital health solutions, and the health systems are not yet set up for it. Therefore, it is a struggle for many digital health startups and scaleups with innovative approaches to new outcomes that go beyond what is existing today.

I want to acknowledge everyone in this area who understands the potential value and impact of what this strange father with his naive, disrupting ideas wants to accomplish. Many digital health companies are focused on the physician, while epihunter’s number one focus is the person with the condition and their caregivers. It is all about the time they’re not in a hospital or doctors practice. Happily, there are many people thinking outside the box (of current healthcare), and there are clear signs of a change in the healthcare systems.

But the two people I want to thank the most are my son, for being my inspiration and for the numerous hours of testing. For carrying his epilepsy and enjoying life. And for being the 17 year old pain in the… 🙂 And my wife, for allowing me to do this, making the family financially very vulnerable, for never challenging my choice and for being a great soundboard at the most difficult times.

And of course my co-founders Dirk Loeckx and Niki Driessen, early investors imec.istart, bluehealth innovation fund and our business angels. Our scientific advisors and the many informal business advisors.

4.

How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

Our family is still impacted everyday by our son’s epilepsy. There are the bad days and nights which require homeworking and a change of plans, there are the many side effects of medication and more importantly, there is the continuous, never ending and most frustrating need to explain, convince, and fight for understanding and awareness for an invisible and unknown condition like r(20) epilepsy. It is not only about the seizures, there are so many more impacts. We talk and stick together as a family. Understanding and accepting that we all make mistakes is most important.

I also have a completely unrelated auto-immune haematological condition called Evans syndrome, that started when I was 14. It means my body kills its own blood platelets, white and red blood cells. Not so good 😉 I spent much of my youth in academic hospitals and there have been three moments in my life where current treatments didn’t help anymore. I am still alive thanks to a clinical trial for a new drug each time. And so I absolutely believe that pharma and medtech companies have a huge need for data and insights, and when they have that, they can understand more mechanisms, and create more therapies for many conditions.

5.

What advice do you have for someone starting their own business?

Talk to many people. You can be careful not to reveal the secret sauce of your invention or business but by speaking with people there’s a high chance they will become enthusiastic about the idea and help you, or give good advice on what changes to make to it.

Hang in there, if it were easy, many other people would do or have done it.

Take care of yourself, the most important piece of your business is YOU. Respect that, acknowledge it and enjoy it. Take care of your body and your brain. Take moments off, both for your physical presence but also for your mind. Worry about your business, but realise that worrying doesn’t help, do something about it or set your mind on something you can do.

Take care of your family, seek good and healthy trade-offs. Perhaps you can increase quality of time together in return for a bit less quantity?

6.

What are the most rewarding aspects of establishing and running your own business?

For me, it is that email from a parent describing the impact epihunter has made to them, their child or their family. It is the feeling that you can make a difference, which also creates a feeling of huge responsibility and pressure. I have always been an intrapreneur in large companies, a bit of a non-conformist pushing the organisation, and today I’m doing the same thing but there’s no umbrella above me, my business choices are direct and impactful, the good and the bad ones. But the learning is incredible!

7.

What would you consider to be the greatest achievements of your business thus far?

The company has built and clinically validated its beachhead for absence epilepsy in Europe, the UK, Australia and New Zealand. In Australia, this product is even already reimbursed. The fantastic results of a prospective clinical validation study that ran in Boston Children’s Hospital and three European reference centres have been published in Epilepsia in February 2022. We’re seeing epileptologists and neurologists using epihunter for diagnosis and follow-ups with their patients with absence seizures. We know that this avoids interrupting the daily routine of the person with the condition and their caregivers, and that’s truly unique. We also learned many times how families lives have changed and children are being allowed to pass to the next grade thanks to the insights epihunter has given school teachers.

8.

What advice would you give someone considering working in the rare disease space?

Again, talk to people, allow your first idea to change thanks to your conversations and the insights you gained. Understand the complexity of the healthcare system but do not let it discourage you.

9.

What are your hopes for the future of your business?

I hope that we will be able to grow the company to cater for many different types of epilepsies and brain disorders, in many countries and healthcare systems. I also hope we can help people living in very remote areas who lack access to much needed healthcare or who are confronted with the harsh misconceptions of brain disorders. I hope our digital products can become as impactful and as common for people with brain disorders as glasses are for people with poor eyesight.

10.

If you hadn’t founded Epihunter what was Plan B?  What did your 10-year-old self want to be?

There was no plan B. I realised that the best way to provide our solutions to as many people as possible was to create a healthy company.

As a 10 year old I wanted to become a motorbike cop, a singer and an inventor 🙂