Rare Leader: Lisa Flint, Founder and Managing Director of The AADC Research Trust

The Basics
Name: Lisa Flint

Title: Founder and Managing Director

Organization:  The AADC Research Trust

Disease focus:  Aromatic amino acid decarboxylase deficiency (AADC) is a genetically inherited neurotransmitter disorder that prevents the production of an enzyme required for the conversion of one chemical to another. Unfortunately, this enzyme is responsible for two of the main chemicals required for everyday living: dopamine and serotonin.

Headquarters:  Surrey, United Kingdom

How did you become involved in rare disease:  My third son Jake was born with a rare disease. He was originally misdiagnosed with quadriplegic cerebral palsy for three-and-a-half years. After 300 appointments, we discovered he had aromatic amino acid decarboxylase deficiency. He was the first British child and the 17th person in the world diagnosed with AADC at that time in 2001.

Previous career: I worked in finance. I ran a sales team for an equipment rental company and raised three boys.

Education: High school graduate

The Organization
Organization’s mandate: Our mandate is to provide the best possible outcome for children living with a life-limiting, life-threatening, rare Parkinsonism brain disease, to raise global disease awareness, and to fund the best quality research that will provide the most potentially tangible outcomes for our growing AADC-affected community.

Organization’s strategy: Since our inception, our aim has been to work through just one neurotransmitter disease from its first discovery to a cure. We initially had to consolidate all known research and evaluate the content when we founded the trust. Decisions were made to improve on this since it was obvious at the time that the treatments used had little to no effect. We needed to create a network where all AADC families could share their experiences and knowledge of the disease within a healthy supportive forum. It became obvious we needed to develop a database for registration of existing and newly diagnosed patients, consensus guidelines for diagnosis and treatment of the disease, discovery of an identifiable biomarker, and implement projects that would build on existing knowledge. We had to form an expert global medical and scientific team that could advise and act on projects that we felt were right for our community. The most important element to all this was that our organization drove the type of research that would most likely reach our goal of a cure.

Funding strategy: We focused on small-scale, local fundraising activities, mostly with family, friends, and work colleagues. I had a son with AADC who I needed to take care of, as well as two other young sons. In 2001, when Jake was diagnosed, only 17 families in the world were discovered. Rare diseases weren’t fashionable then like they are today. We had issues with local grants because Jake was the only British child and most grant providers wanted local communities or big charitable organizations to benefit from their contributions.

What’s changing at your organization in the next year: The time is perfect for us to create an umbrella organization for many similar and largely unsupported neurotransmitter diseases. Rare diseases are fashionable at the moment and what we’ve achieved over the past 12 years will benefit this larger community of sufferers. We have created a platform that is transferrable and interchangeable. With the help of some of our medical and scientific advisory board members we have selected more than 20 diseases that would benefit from the work we have carried out on AADC. We can facilitate research in a more tangible way for all these groups.

Management Style: Being positive is critical to having a happy workforce. I didn’t realize until recently that my own presence, attitude, and demeanor had such a profound effect on the people around me. I’m a creative thinker and like to do things a little differently than everyone else. I think outside the box. I often observe how most people are doing something and then look to do it differently. I think my creative ideas scare those around me sometimes and they dread when I ask them to come together because, rest assured, the ask will usually be huge. I do think I help people believe they are capable of anything. We never know how we’ll do unless we’re really challenged. Sometimes those challenges are uninvited.

Management philosophy: I believe you should think big. Nothing is impossible until it’s impossible. “Be different” is one of our adages. After all, our children are different, rare, unique, and have no choice but to approach life in much more complex, life-limiting, and desperately sick way. Parents of our children have to be different. For their children to survive, they have to be a parent, caregiver, nurse, teacher, as well as all things to the rest of the family. It is best to think big and work it back from there. It doesn’t come bigger than believing you’ll find a cure for one of the most rare and complex brain diseases, so anything less than that is doable. Those around me know what’s needed but are probably perplexed as to how we’ll deliver. So far, we’ve pretty much delivered on all our ideas whether they be medical, scientific, therapeutic, or fundraising. Those that haven’t worked out we’ve changed.  Moving forward and never standing still is key to success.

Guiding principles for running an effective organization: Stay focused but be flexible and adaptable about the job at hand – finding a cure for AADC deficiency.

Best way to keep your organization relevant: Keep up with translational science and the needs of our families.

Why people like working for you: I am passionate about our charity and its cause. I talk endlessly about it in the hope that people will share the same passion as me, although the conversation may make people glaze over a little. We are the underdog, the rare disease struggling for every penny and making it count by investing in good science.

Mentor: My son is my mentor. He keeps me focused and makes me reflect constantly because every day is a challenge for him.

On the Job
What inspires you: Jake inspires me. He’s amazing with all he has to endure. How can you not just keep going when he does?

What makes you hopeful: Every time research provides a little bit more of the detail of the disease, which will ultimately produce our cure.

Best organization decision: Forming an incredible medical and scientific community to connect with our AADC community and care for other AADC children as much as their parents do. We are a big family.

Hardest lesson learned: I cannot save all our children.

Toughest organization decision: Closing our charity shop and releasing 30 volunteers from our local community was our toughest decision.  The volunteers who worked for us found a family who cared and offered support if needed, advice when asked for, and a friend to listen to them.

Biggest missed opportunity: Opportunities are only missed if you know exactly how they will play out. Otherwise, how do you know if they were real opportunities? Living with a son with a rare disease you just learn to take each day as it comes.

Like best about the job: I like to learn more about the disease, understand it better, and impart new strategies and ideas that could benefit our families and engage with them on a personal level. That gives me a lot of joy.

Like least about the job: What I like least is losing any of our AADC children.

Pet peeve: Not having enough time in the day to do everything.

First choice for a new career: I would pursue a scientific career. It is something I didn’t realize I would enjoy as much as I do.

Personal Taste
Most influential book: Congenital Neurotransmitter Disorders: A Clinical Approach by George F.  Hoffmann and Nenad Blau

Favorite movie: I’m not really a film person. I like stories which are attached to real life experiences. I much prefer series and season programs, such as Suits, Billions, Shooter, Blue Bloods, and Nashville

Favorite music: Fix Me

Favorite food: Curry

Guilty pleasure: Gin and tonic

Favorite way to spend free time: Spending it with my husband of 32 years, three boys, and their partners, mostly during holidays. With everyone grown up and living their own lives, these times are especially valuable to me. We are extremely close.

July 26, 2018