TPI Research Project at Kings College Hospital, London
On the 21st July 1994, James's parents David and Yvonne, accompanied by Yvonnes Brother Peter Stokes met up with Professor Alastair Bellingham and Dr Mark Layton of Kings College Hospital, in London to discuss the possibility of funding a TPI research Project under their care. Professor Bellingham is the leading Haematologist in respect of TPI deficiency in the UK and has diagnosed and managed the 3 previous known UK TPI families.
The outcome of the meeting was that Professor Bellingham would be willing to conduct a 3 year Research Project on behalf of the Stewardson's, to try and find a treatment or cure for TPI. The cost would be in the region of £214,000.
Shortly after this meeting 4 month old Jordan Stokes of Chesterfield was also diagnosed with TPI, Stokes is Yvonnes maiden name!! Jordans parents, Rachel and Brendan became trustees of the charity. Tragically Jordan passed away aged 2yrs and 10 months on January 18th 1997.
Professor Bellingham set the families a initial target of £40,000, this would be enough to get the project off the ground and enable Kings College Hospital to start recruiting the 2 scientists required for the project.
Prospectus For The Treatment of TPI
The Prospectus for treatment of Triose Phosphate Isomerase Deficiency, drafted by Dr Mark Layton and Professor Bellingham included the following 'Aims and Objectives' for the research project:
1) To assess feasibility of bone marrow transplantation or enzyme replacement as approaches to reversal of the clinical effects of TPI deficiency.
2) Development of a mouse model of human TPI deficiency by gene targeting.
3) To define the mechanisms responsible for the variable effect of TPI deficiency on brain function.
By the end of September 1994 over £40,000 had been raised via various fund-raising events by the Stewardson and Stokes families. This was enough to give Kings College Hospital the confidence to advertise for the first of the 2 scientist posts the James Stewardson TPI Trust was funding. Unfortunately, despite 2 seperate recruitment campaigns, finding the right calibre of scientist was proving to be very difficult. Eventually, after the 3rd recruitment campaign, which received about 80 applications, Dr Art Ationu and Dr Anne Humphries joined Professor Bellingham's team in December 1995.
They joined Dr Mark Layton and Dr Roopen Arya on the TPI Research Program, Roopen has been conducting TPI research for Professor Bellingham under a 2 year Medical Research Council (MRC) grant. Dr Mark Layton has been the main point of contact for the Stewardson and Stokes families since James and Jordan were diagnosed.
In December 1998 the 3 year project was extended until July 1999 as part of the James Stewardson TPI Trust grant and a submission to the national lottery for funding of the TPI Research Project for a further 2 years after that date was submitted.
Funding has also been made by the James Stewardson TPI Trust to Professor Susan Hollan's Team in Hungary for the past 3 years.
The Prognosis for TPI
The official launch ceremony at Kings College Hospital in April 1995