RARE Daily

Rare Leader: Torie Robinson, CEO, Epilepsy Sparks

November 7, 2019

The Basics
Name: Torie Robinson

Title: CEO

Organization: Epilepsy Sparks

Social Media Links:

Disease focus: Epilepsies and mental health comorbidities. With general epilepsy and rare epilepsies there is a high rate of mental illness among people. It’s often overlooked.

Headquarters: London

How did you become involved in rare disease?

I was contacted by and asked to join EpiCARE; an EU-funded organization for rare epilepsies.

Previous career: Corporate finance – which I left after a temporal lobectomy (for my own epilepsy) and mental health illnesses. I then worked with a mental health charity and the combination of these led me to my real passions: epilepsy and mental health.

Education: Reading every day – left college before graduating.

The Organization
Organization’s mission: We are here to empower those affected by epilepsy and psychiatric comorbidities, to translate epilepsy research results to make them exciting for the majority, encourage investment in research and care for those affected by the epilepsies and psychiatric comorbidities, to inspire collaboration between organizations that have related purposes. We are very passionate about managing people’s expectations regarding treatments too – the word “cure” is thrown around like nobody’s business and frequently misleads people. We want them to question information and data thrown at them by the media and gather an understanding of what empirical evidence is. We also want to get more people who aren’t affected by neurological or psychiatric health issues interested in the human brain.

Organization’s strategy: We are going to be the most reliable, popular organization available online for obtaining clear, honest reviews of epilepsy products, and be the organization which bridges the gap between neuro professionals, patients, and the rest of the world in terms of communication; aka the translator. We want to be the organization to approach regarding epilepsy and psych comorbidities that is considered cool and interesting rather than boring, formal, and intimidating. We’ll have a 100 percent greater exposure and impact within the psychiatric field (talks and publications) in the next five years, and connect potential experts of experience with medical organizations to break down those barriers, such as communication and classism. Yes, they still exist, we know it – although we are slowing improving. We will be speaking to 400 percent more people with epilepsy, carers, employers, epilepsy medical professionals, researchers, scientists, and mathematicians, and we’ll be approached by 100 percent more media organizations by September 2020, with a particular focus on Australia, United States and India. It’s a lot, but it’s smart.

Funding strategy: Corporate sponsorships, grants, and training

What’s changing at your organization in the next year: We will have a new addition to the team, are launching a newsletter in the next two weeks, and launching our first epilepsy training course for employers. The blog will have a new mix of international contributors, and we will have a new section on the website where we review the new electrical devices/apps targeted to help those affected by epilepsy.

Management Style
I provide the organization with direction and leadership, while providing an open environment of honest communication and creativity. It’s very important for people to figure out what they enjoy and what they want to improve upon, so that it’s of benefit to both them and the organization. 

Best way to keep your organization relevant: It’s to have ongoing communication with the people affected by epilepsy and mental health (from all backgrounds). It’s to understand things from the perspectives of the doctors, nurses, scientists, researchers, and charities. It’s to keep in touch with how economics and culture impact individuals, families and corporate decisions. Then use that to combine all of that information to decide on our focuses for the months and years to come.

Why do people like working with you: I’m told that it’s my candid expression, honesty, humor, and personal passion to make a difference to those affected by epilepsy and mental health illnesses.

Mentor: My current mentor is an amazing mathematician and entrepreneur. He’s very intelligent but can relate to those on all levels. He uses his work to benefit those affected by the epilepsies. He’s incredibly honest and funny – traits which I truly value.

On the Job
What inspires you: There’s a combination of things that inspire me right now. First of all, it’s the ongoing combined work by researchers, scientists, geneticists, neurologists, epileptologists, epilepsy nurses, neurosurgeons, neurophysiologists, and mathematicians who are coming together to build a better future for those affected by the epilepsies. I know many people affected by epilepsy and rare diseases who make me laugh and who are so uplifting despite their conditions. These are the people for whom I fight. Do you know what else inspired me? It’s my friends, who are the family I choose for myself.

What makes you hopeful: Ongoing research into epilepsy genetics, treatments, prevention, and then education makes me hopeful. When we have valuable data derived from empirical evidence, we can then use it to devise new medications and gene therapy for those affected by the epilepsies and rare illnesses. Also, when I work with people who don’t conform to societal norms but benefit all of us with their creativity and intellect, it makes me smile. Given that medical research can be such a formal and competitive industry – they make everyone take a step back, smile, and relax. They encourage others to do the same.

Best organization decision: It was when I decided to just go for it and approach high-profile professionals from other countries. It’s so much more exciting to involve a broader spectrum of people!  

Hardest lesson learned: Nothing is ever perfect.

Toughest organization decision: Putting myself first when I need to. I have epilepsy and psychiatric comorbidities myself. I need to remember to take it easy at times.

Biggest missed opportunity: Opportunities are there right now on all continents and unfortunately, I can’t be up on each all at the same time. When the team grows though, there will be fewer missed opportunities.

Like best about the job: Meeting new people and learning and seeing the positive impact that research and education on the human brain has and will have upon so many people around the world.

Like least about the job: The pressure I put on myself. Also, the way I need to sometimes get up at 2 a.m. for a call and then lie in bed until 11 a.m. to make up for the sleep. However, I’m used to it, so it’s not so bad.

Pet peeve: The short-term mindedness of investors including governments when it comes to medical research and trials.

First choice for a new career: I always wanted to be an airline pilot when I was little; which when I was diagnosed with epilepsy, of course wasn’t going to happen! I still love flying though and if I could (which would involve no temporal sclerosis having arisen in my case) I would!

Personal Taste
Most influential book: I love the book: Factfulness: Ten Reasons We’re Wrong About the World – and Why Things Are Better Than You Think by Hans Rosling, Anna Rosling Ronnlund, and Ola Rosling. There’s too much negativity out there in the press and this book is based on fact and positivity.

Favorite movie: The Shawshank Redemption is my favorite movie of all time. I love the Morgan Freeman and Tim Robbins bromance. It’s so heartwarming. The story gives you hope.

Favorite music: Queen. Bohemian Rhapsody is my favorite song of theirs. There’s nothing like a bit of Beethoven either.

Favorite food: Cadbury’s Dairy Milk/Toblerone. Oh, and salad. I have to have salad every day-with no dressing.

Guilty pleasure: Watching (at the moment): Power and Billions

Favorite way to spend free time: Playing my piano (I’m studying for my grade 6), reading, and walking and being around nature. I love my plants.

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