Isabel DiVanna

I first became in involved with the TSA in 2016. At that time, I was working at a special educational needs school in Swiss Cottage, London, with over 200 learners aged between 2 and 19. Over 60% of the students were in the Autism spectrum, with a variety of needs. My job was to promote the work of the school to other special education needs schools in the UK and internationally, in order to complement our Local Authority funding. As a result, I spent a lot of my time understanding the processes of diagnosis of children’s special needs, as often the complexity of their needs emerged as they matured – from tiny toddler at 2 years old to  the end of the primary school level (so 10 years old). Before I joined Swiss Cottage School I did not know, for example, how often a diagnosis of Down Syndrome was given only to be changed later to Autism, how many times one type of epilepsy (with global delays as a result, for example) went undiagnosed for its cause (often called “idiopathic”, meaning cause unknown), which meant that educational and care plans for young people with special needs were difficult to create.

Why was this somehow linked to my getting involved with TSA? Well, because one of our young pupils was then being diagnosed (at that time, no one had really identified what condition he had), and the condition “tuberous sclerosis complex” was mentioned by a teacher at a senior leadership meeting. I did not know what it meant, and a teacher explained to me, as the teaching staff felt that it fitted the child's symptoms. I went home and started researching it a bit more, and I called my mother in Brazil, as she’s a psychiatrist and I thought she might know a bit about it - she is my go-to person for all medical enquiries. So she told me the name of this condition in Portuguese (“tuberosclerose”) and that a cousin of mine actually suffered from the condition.  I kept researching online and I found the TSA website, and amongst other searches, I found an advert for a Trustee (well, Vice Chair, I think it was) for the TSA. I was at that time already a trustee at another medical research charity, and I knew what commitment it would demand of me (and how much I enjoy it!), so I applied for the post.

My first real feel for the organisation was at the interview, because that’s when the Chair, then Vice Chair and another Trustee (and the then CEO) explained to me what kind of charity it was, and they asked me probing questions. If I can be honest (and I am always honest), I did not think at the time that they liked me very much! So I left the interview feeling that it was a shame they did not like me, and I used the rest of the afternoon to go shopping as I was a bit sad. I was really surprised and pleased when I heard back from the organisation later that day as they were offering me the post. I am sharing this here because this experience with TSA is something I value very much, it shows you how you can get the wrong impression and even talk yourself down for absolutely no reason. It reminded me also to try and always use my most positive body language because people may be having a bad day or a bad time, and the more we show them we appreciate them, the more likely they are to feel good about themselves.

So far, I have worked with the Chair and Vice Chair (before being appointed Vice Chair) on a number of important strategic matters (things that really, really are important to the future of TSA). These have included recruiting a new CEO, and now ensuring that as the new TSA strategy evolves, that the teams are structured in the best way to deliver the strategy. I have worked with the Board and the teams on the groundwork for launching a new fundraising strategy, and the best way to make noise about TSA so that more people know about this condition and how important it is to find a cure. Every time I chat with people who have TSC, or whose nearest and dearest have TSC, I am in awe of the challenges they face and how they overcome them, and I am proud to have played a small part in supporting them.

The TSA of today is, I hope, very much different from the TSA of the future. I hope in the future there will be minimal need for TSA, because we will have worked with our partners and colleagues to find a cure for this condition, so there will be less and less need for care and for campaigning about it. TSA will then, I hope, have evolved and maybe even merged with other charities focusing on rare genetic diseases, so they can work more closely together and help more people, in even more meaningful ways.