One year and counting!
It’s been over a year since the start of Neuro-Diverse.org and what a year it’s been!
From re-starting with nothing, after being made redundant, but passion and a desire not to leave such an interesting area as tics and Tourette Syndrome, and neurodiversity in general, I’ve never been so busy and am involved in many diverse and exciting projects! I say ‘starting with nothing’ but my colleagues, friends and the Tourette community have made me feel like I have much to offer. Creating the company and having my own creative control has been a fantastic opportunity to collaborate on a global scale.
Colleagues I have worked with have given the kindest and most glowing recommendations I could hope for. I’ve linked up with so many people and associations on social media and taken on a wonderful mix of pro bono as well as paid work. I love doing both and I give priority to projects that fascinate me and when it’s clear they will be beneficial to patients and healthcare professionals.
Before the pandemic I was already convinced of the utility of video conferencing with collaborators around the world but the global crisis seemed to bring us together and soon everyone was used to work remotely in this way. From this we have proof that research, education and collaboration can occur on a global level without necessarily travelling to face-to-face meetings.
I’ve had the opportunity to work with world experts in epilepsy via my work with the International League Against Epilepsy (ILAES) and the American Epilepsy Society (AES) to help in the standardizing of clinical data elements (CDEs). By standardizing the collection of investigational data this will facilitate comparison of results across epilepsy studies around the globe. With epilepsy being one of the most common neurological conditions this ILEAS initiative has the potential to improve the lives of many by leading to new transformative treatments for people with epilepsies.
Another fascinating collaboration I have been involved in is with the Resilience research group (RRG) global network @ResilResGroup. This is an international collaborative group of researchers which aims to develop high quality resilience research. We have created a podcast series on resilience and the most recent one was on resilience and Covid. Fascinating listening and wonderful to have found a rich seam of collaboration and contacts in this group.
Is it just coincidence that I have been collaborating with resilience researchers during a time that has been, and continues to be, so uncertain and trying? I think resilience is a topic which ties in with so many of my interests such as neurodiversity and child development. This also ties in to our own personal perspective on resilience and how we react in new and challenging situations – it’s certainly been something I have thought about when I’ve stopped for breath during this unusual episode we’ve been going through.
I look forward to more challenges and exciting opportunities with future collaborations – perhaps with some of you reading this!