The THANDIE 250 Fundraising & How You Can Support

In 2009, aged 5, Thandie was the first person in the world to be diagnosed with RTH-Alpha.

RTH-Alpha is a genetic ‘spelling mistake’ that affects Thandie’s thyroid hormones, the vehicle responsible for many fundamental physical and cognitive aspects of human development.

Since her diagnosis, Thandie has been under the care of Great Ormond Street Hospital for Children, Addenbrookes Hospital in Cambridge and the University of Cambridge. The research, assessments and medical interventions that have been such a major part of Thandie’s life have allowed those amazing institutions and their dedicated medical professionals to markedly improve the lives of those who have been subsequently diagnosed.

Children growing up with RTH-Alpha face significant cognitive challenges, which require specialist interventions in areas including neuropsychology and educational psychology, occupational therapy, and speech and language therapy. Professional, rigorous, detailed and independent assessments are essential for establishing the educational needs of children suffering with this condition.

Thandie’s godfather David is running the Marathon des Sables for Thandie and for the educational futures of other RTH-Alpha children. David is an extraordinary sportsman, explorer and entrepreneur. He, together with his rowing partner, Guy, is a Guinness World Record Holder for their 2022 Atlantic crossing.

David’s 2023 challenge is to run the 37th Marathon des Sables. It is considered to be the world’s toughest footrace – the equivalent to running six marathons in six days. It’s a race of 250 kilometres through the sands of the Sahara Desert, where temperatures regularly reach 50C. Participants must be self-sufficient, carrying everything with them that they will need. David is dedicating his participation in this incredible challenge to The Thandie 250 and we cannot thank him enough for participating in this extraordinary challenge on her behalf and that of other young people.

Thandie’s Medical Team & The Need For Vital Educational Assessments

Professor Chatterjee, Head of Endocrinology at the Department of Medicine at the University of Cambridge, led the team who made Thandie’s initial diagnosis, and has cared for her for over 15 years. He says that one of the many issues for his other young RTH-Alpha patients is accessing the resources to provide the critical neuropsychological and educational assessments they need.

In September 2022, Thandie started Sixth Form at St Catherine’s School, a highly specialised residential school and college in Ventnor on the Isle of Wight. She has just started her second term and even in this short amount of time, we have seen the extraordinary progress she is making in a specialised setting.

The fight for Thandie to have access to the right education has been long and complicated. We cannot express how joyful it is to see our daughter in the right setting with the right educational guidance and systems that will change her life for the better. We want the parents of other RTH-Alpha children to have better and affordable access to these essential educational assessments, which allowed us to fully comprehend what Thandie’s needs were, and to fight for those needs.

How your support will help Thandie and other sufferers of RTH-Alpha

Despite our successful battle to get Thandie a place at St Catherine’s School, local authorities review their commitments to young people with special educational needs annually, and their future commitment cannot be guaranteed. Hence our decision to form The Thandie 250 educational fund. We propose that 50% of the money raised by The Thandie 250 will go into a fund, to be used to secure Thandie’s future at St. Catherine’s School. The other 50% will create a separate fund to be administered by Professor Chatterjee at Cambridge University for allocation to his young patients who don’t have the resources to access specialised neuropsychological and educational assessments.

100% of the money raised by The Thandie 250 will be deployed as described; all administration, race costs and any other expenses are covered by David and by Thandie’s family.

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