1984 – 1990

1990

Dr Steven Alani £200: Hope Hospital, Manchester, England
To attend the fifth European congress of neurophysiology.

Dr James Edmond Wraith £25,300: Willink Biochemical Genetics Unit, Royal Manchester Children’s Hospital, England
Year three of a four-year appointment as Consultant Paediatrician to specialise in the diagnosis and clinical management of MPS children and their families throughout the United Kingdom.1989

Dr Martin Bax £15,000: Westminster Children’s Hospital, London, England
A study over 1 year to describe the feeding difficulties of children with MPS diseases.

Dr James Edmond Wraith £31,254: Willink Biochemical Genetics Unit, Royal Manchester Children’s Hospital, England
Year two of a four-year appointment as Consultant Paediatrician to specialise in the diagnosis and clinical management of MPS children and their families throughout the United Kingdom.

1988

Prof John Hopwood In Kind: Adelaide Women and Children’s Hospital, Adelaide, Australia
Organised the collection and despatch of over 100 blood samples from MPS II, Hunter children, and MPS I, Hurler children, which in 1990 and 1991 respectively resulted in the isolation of the genes for these diseases.

Dr Charles Pennock £300: Bristol Maternity Hospital, Bristol, England
Cost of couriering blood samples from parents of children with MPS III, Sanfilippo disease, in order that carrier detection using a method described by Dr Ruben Matelon in the USA, could be undertaken.

Dr James Edmond Wraith £34,272: Willink Biochemical Genetics Unit, Royal Manchester Children’s Hospital, England
Year one of a four-year appointment as Consultant Paediatrician to specialise in the diagnosis and clinical management of MPS children and their families throughout the United Kingdom. At the end of this four-year grant, Salford Health Authority agreed to take over the responsibility for Dr Wraith’s continuing funding in this field.

Dr Irwin Olsen £5,000: Mathilda and Terrence Kennedy Institute, London, England
Final year of a two-year grant to fund PhD student, Mr George Bou-Gharios, to study the use of the electron-microscope for cell to cell transfer of lysosomal enzymes from lymphocytes.

Dr Diana Chase £6,000: Unilever Research Laboratories, London, England
A six-month extension to continue to attempt to isolate the Hunter enzyme.
Athough Dr Chase’s attempt was not successful, her work did result in some biochemical developments for another metabolic condition, Wilson’s disease.

Dr Martin Bax & Dr John Watters £10,500: Westminster Children’s Hospital, London, England
A project to continue to study the sleep disturbance of children with MPSIII, Sanfilippo disease, involving detailed observations of children’s sleep patterns in their homes.

1987

Dr Irwin Olsen £5,000: Mathilda and Terrence Kennedy Institute, London, England
First year of a two-year grant to fund PhD student, Mr George Bou-Gharios, to study the use of the electron-microscope for cell to cell transfer of lysosomal enzymes from lymphocytes.

Dr Diana Chase £12,000: Unilever Research Laboratories, London, England
An attempt to isolate the MPSII deficient enzyme from other proteins and to study its structure.

Dr Martin Bax and Mrs Gillian Colville £10,000: Westminster Children’s Hospital, London, England
A psychosocial research project to look specifically at three major problems identified in the earlier natural history study of MPS diseases.

  • Developmental assessments for children with MPS I Hurler, Hurler Scheie and Scheie disease
  • To establish the distinction between boys with progressive neuro-degeneration of MPS II, Hunter disease and those with a more attenuated form
  • Behavioural and sleep problems in children with MPS III, Sanfilippo disease.

1986

Mr Ben Taylor £1,335: University College Hospital, London, England
To attend a conference on spinal cord monitoring and to work alongside Dr Steven Kopits in his MPSIVA, Morquio clinic in Baltimore, USA.

Prof Matteo Adinolfi & Dr Diana Chase In Kind: Guy’s Hospital, London, England
Over 50 families of children with MPS II, Hunter disease, provided hair root samples and donated 10ml of blood for research to establish a simple screening test method for Hunter carrier status.

Dr Steven Kopits £4,200: Saint Joseph’s Hospital, Baltimore, USA
Introduction of a specialist technique to fuse the cervical spines of children with MPS IVA, Morquio disease. This resulted in the first successful surgery of its kind in England performed jointly by Dr Kopits and Mr Andrew Ransford and his team at University College Hospital, London, England. Children and adults with Morquio disease now receive this treatment which has been developed and refined over the last 20 years in London, Birmingham and Manchester. Without this surgery, children with underdeveloped or missing occipital pegs at C1 and C2 of the cervical spine, or developing compression of the cervical spine, usually develop paraplegia or quadriplegia and die at a much earlier age.

Dr Irwin Olsen £3,000: Mathilda and Terrence Kennedy Institute, London, England
The purchase of a fluorimeter to rapidly and accurately measure minute quantities of the deficient enzyme in cells and tissues from MPS children.

Dr Martin Bax £10,000: Westminster Children’s Hospital, London, England
Year 2 of a systematic study of the natural history of MPS disease involving over 200 MPS families.

1985

Dr Martin Bax £10,000: St Mary’s Hospital, London, England
A systematic study of the natural history of the Mucopolysaccharidoses in affected children. Year 1 of the grant to study over 80 affected families through questionnaires and home visits.

1984

Dr Irwin Olsen £3,700: Mathilda and Terrence Kennedy Institute, London, England
Automated sampling and recording equipment to facilitate the measurement of changes in enzyme activity in cells from MPS children.

Dr Lubec In Kind: Vienna Children’s Hospital, Vienna, Austria
Samples of hair from MPS children, their siblings and parents provided in order to carry out further research into the early detection and screening for MPS.