Meet Megan Gilbert, MBBS. FRANZCP, TESS Board of Directors Member

How did you get involved with TESS Research Foundation?

I am the mother of 28-year-old TESS Superhero Scott, who had a long pathway to the diagnosis of SLC13A5 Epilepsy, having only found out that he had the condition at the age of 26. At this point in our lives, we are very keen to find out as much as we can about the disorder and be as involved as much as possible with the wider community, having spent so much time doing it alone.

What inspires you to contribute your time and skills as a director on the TESS board?

There are so many reasons. First and foremost, there is the drive to find a pathway forward in the management of those who suffer from SLC13A5 Epilepsy—not only in terms of the immediate management of the often refractory epileptic condition but also the long-term goal of gene therapy and cure. Being on the board allows me to be involved directly in this process.

Secondly, as a psychiatrist, I am only too aware of the bigger ramifications of this disorder in terms of the impact on families and caregivers, and can lead to issues that may range from adjustment and grief issues to complex PTSD. I am hoping that my involvement on the board can raise awareness of this and hopefully extend support to the wider SLC13A5 Epilepsy community. I also hope that by being in Australia I can extend the TESS community to a much broader, global network.

What is the best thing about being part of this community?

For me the best thing about this community is the whole sense of community. Having felt isolated from other people and families with this condition, I am personally only too aware of how this has the potential to affect someone negatively. From a psychiatric perspective, three of the most important pillars that support mental health and well-being are being able to commit to something, belonging to something, and being able to act in such a way that benefits others. I can achieve these benefits by being a part of this community, not only as a director on the board, but also as a family member. For this reason, I encourage others to be involved as much as possible.

How can others help make a difference for children and families with SLC13A5 Epilepsy?

Involvement in the TESS community at any level by anybody is beneficial for everybody. This can be done on an individual basis by others providing emotional and, at times, physical support for the superheroes and their families, which eases their load, or can be done on a more communal basis by spreading the word or by financial support. This helps not only those living the experience of SLC13A5 but also benefits the giver as our superheroes have so much that they can teach us about strength, resilience, and unconditional love.