It was with great shock and sadness at the end of 2023 that the TSA announced the passing of Tom Carter, TSA Trustee and Lifetime President, following a short illness. The TSA now plays tribute to Tom

Tom was a vital member of the TSA team, from the charity’s early years right through to his passing. Tom held various important positions within the charity and can be credited with being one of the reasons that the TSA developed into the charity that it is today.

Born in 1947, Tom spent his life in the Nottingham area. Originally training and working in textiles, Tom went on to achieve a Business Management degree from Nottingham Polytechnic (now Nottingham Trent University).

Tom met Anne, his wife of over 50 years, when both were teenagers. They married in 1970 and in 1977 welcomed their daughter, Sally-Anne. In the first few months of Sally-Anne’s life, she was diagnosed with TSC. This lifechanging moment – one that parents and caregivers in the TSC community know all too well – put Tom and Anne onto a very different path that they had expected for their family.

Following Sally-Anne’s diagnosis, Tom and Anne were determined to make sure their daughter and others with TSC received the care and support that they deserved. This led to the couple being part of the original group of TSC families that pushed support, awareness, treatment and management of the condition to levels never previously seen, through the TSA.

In 1978, just a few short months after the official launch of the TSA, Tom was welcomed to the TSA’s Board of Trustees. This was a role that Tom would hold for the next 45 years. Anne joined the TSA as Appeals and Publicity Officer one year later. Tom and Anne were central to a campaign at this time to raise funds for research into TSC, with the amount needed previously being viewed as impossible to reach. After meeting this fundraising target, the subsequent research funded by the TSA led to major breakthroughs into our understanding of TSC. Future  research that the TSA was part of included the identification of the two genes responsible for TSC: TSC1 and TSC2.

Tom became Chair of the TSA Board of Trustees in 1987, then becoming President in 1992. Later, the TSA was then proud to award Tom with the title of Lifetime President, a role he held until his passing.

Over the following decades, Tom and Anne continued to be central at the TSA, including raising significant funds for the charity. This undoubtedly had a life-changing and life-saving impact on tens of thousands of people in the TSC community.

As well as having a focus on fundraising and awareness-raising of TSC, Tom was also a strong advocate and campaigner for those with TSC. In particular, Tom was a key advocate in education rights, as well as the rights of young people with the condition. The influence that Tom had in progressing all areas of TSC support, research and advocacy was not limited to the TSA only. Tom was crucial to the TSC cause all around the world. Most notably, Tom was a committed ally of E-TSC, the European-wide umbrella organisation for all TSC groups.

Tom achieved so much as a ‘behind the scenes’ representative of the TSA, but also accomplished possibly even more as a public face of the TSA and TSC community. Many people in the TSC community know Tom having spoke with him at TSA events over the years. Possessing the wonderful yet rare asset of almost never forgetting a name, Tom would always remember you even if years had passed since he spoke with you. This truly embodied the spirit of the TSC community as a family, which the TSA still fully believes and embraces.

Tom became well known for offering support to everyone in the TSC community through a combination of wisdom, warmth and humour. Tom always had a knack of helping people reconsider what originally felt like an impossible situation – perhaps a recent TSC diagnosis, a challenging time in treatment management, or something else – into one that was actually achievable or at least manageable.

In the later years, Tom remained a steadfast and important member of the TSA team. When the TSA negotiated very difficult times during the financial crisis and then the COVID-19 pandemic, Tom was a welcome and warm ally to the TSA Board of Trustees and Senior Management Team. During difficult times, Tom would be on-hand to help provide direction, structure and passion that gave the TSA team the belief and courage to get over these and other hurdles.

Luke Langlands (TSA Joint Chief Executive) commented: “Tom demonstrated the spirit, will and determination of all individuals and families affected by TSC. Working so closely with someone who had such history with the charity was always a pleasure. As a Trustee, Tom provided us with great expertise as well as a direct connection to the TSC community. From both a personal and professional perspective, we’ll miss Tom dearly.”

Tom has and will continue to be a major influence on the charity, although there is now a gap left by his passing that will never be filled. Although Tom’s massive contribution was always acknowledged, it is now with his absence that it is so keenly felt.