The TSA will host it’s Annual General Meeting (AGM) 2024 on Monday 18 November. At the AGM, a vote will take place on whether to welcome two new potential Trustees onto the board. Here, you can find out more about them
Everyone in the TSC community is welcome to vote at the TSA’s AGM (click here to find out more and register). Maxine and Stacey will be well known to many people affected by TSC. But, it’s important to share information about their background and experiences, to make sure everyone feels ready to vote on their suitability to be part of the TSA’s board.
Maxine Smeaton
Maxine Smeaton led the transformation of Epilepsy Research UK over the last five years culminating in the government approval to become the Epilepsy Research Institute. Maxine moved into the charity sector in 2009, following the acquisition of her technology strategy and architecture consultancy. She has subsequently led R&D programmes for some of the UK’s largest charities, including Action for Children and Royal Mencap Society. She was previously the CEO of The Blond McIndoe Research Foundation and Interim CEO of the Tuberous Sclerosis Association.
Maxine has an MSc from Bayes Business School in Grant making & Social Investment, She holds the Institute of Fundraising MInstF(Cert) fundraising qualification.
Having held the post of Interim CEO at the TSA around six years ago, she is aware of the history of the organisation and the significant transformation the charity has recently undertaken to provide greater impact and ensure sustainability. She has maintained close working relationships with the TSA team and joined forces on research funding and fundraising events. She has also maintained contact and relationships with a number of the TSA staff (past and present) and members of the TSC community.
“TSC is clearly a complex and debilitating condition requiring significant clinical management and support. I would be delighted to support the vital and unique role the TSA plays in supporting those affected and would like to contribute in whatever way is useful to help build the capacity of the staff team and share insights, expertise and experience where appropriate.”
Maxine splits her time between living in London and Anglesey with her partner. They have two grown-up children in their 30’s “but the badly behaved German Wirehaired Pointer has yet to leave home.”
Dr Stacey Bissell
Stacey is a researcher based at the University of Birmingham, with a specific interest in TSC-associated neuropsychiatric disorders (TAND), namely the profile of poor sleep in children and adults with TSC, and the association between sleep and behaviours that challenge (self-injury, aggression, impulsivity).
From 2014 – 2018, Dr Bissell completed a PhD that was co-funded by Cerebra and the Tuberous Sclerosis Association. Families welcomed Stacey into their homes to complete developmental assessments, which made Stacey feel “incredibly lucky to be a part of their journey.”
In 2019, Stacey joined the TAND consortium as part of the TANDem project (Prof Petrus de Vries and Prof Anna Jansen), as the Cluster Lead for sleep and eating behaviour. As a researcher, Dr Bissell is committed to improving TAND-related outcomes for children and adults diagnosed with TSC, with a view towards improved targeted behavioural support for families.
“It would be an honour to serve as Trustee on the TSA’s board. I am truly indebted to this charity for their continued support over the last 10 years. Outside of work, I am a big live music fan (I did secure Oasis tickets, no, it wasn’t easy!)”
