Patrons, Trustees, Advisors

 Patrons

Professor Timothy Cox (MD, FRCP, FMedSci)
Tim is not only our ‘Lead Patron’ but is also a member of our Advisory Panel. Tim is Professor of Medicine at the University of Cambridge, with clinical responsibility in acute internal medicine and metabolic diseases at Addenbrooke’s Hospital. His recent research has focused on the molecular pathogenesis and treatment of Lysosomal Storage Disorders.

Suzi Digby (Lady Eatwell) OBE
Suzi is a world-renowned musician and Choral Director. The founder of the London Youth Choir among many others, she has a passion about the benefits of singing together in groups and the improvement it can make to one’s well-being. Among Suzi’s many achievements have been Presidency of the Incorporated Society of Musicians, and Visiting Professor of the Thornton School of Music, at The University of Southern California.

Iain Stewart MP
Iain is the Member of Parliament for Milton Keynes South, which is where MLD Support Association UK was founded. He has expressed an interest in the charity and its development from the start. His Parliamentary responsibilities are mainly in the field of Transport, but he nevertheless supports the charity and encourages our growth.

 

Trustees

Vivienne Clark – Trustee and Chair
Following over a year of battling with doctors, Vivienne’s son, Scott, was diagnosed with adult-onset MLD in August 1995 at the age of 23. He was one of the first in the UK to have a life-saving Bone Marrow Transplant, although he is now in care during the week as he has serious cognitive problems. Vivienne has spent many years campaigning for early diagnosis of MLD, including giving lectures to health professionals in Neurology and brain injury units. Together with Twila D’Cruz and Bob Stott, she helped set up MLD Support Association UK in 2012. Vivienne has a background in business management and marketing.

David Lawson – Trustee
David Lawson has known Scott Clark for more than thirty years. He has seen him as a stroppy political minded teenager growing into a talented University student turning into a confused University student. Then he underwent a long period of medical diagnosis, bravely facing serious operations and procedures and following these living in care homes, together with regular and frequent visits to his parents. He is now a largely fit happy person, taking pleasure particularly in singing his infinite repertoire of popular music, but except for unexpected and occasional interjections from the brain of his intellectual past, not able to execute the simplest task unaided.

Scott used to work with the business regularly as a holiday job and here David was the first outsider to observe the arrival of the disease, when it became clear that Scott was no longer able to cope with the administrative tasks that he had previously enjoyed doing.

Twila D’Cruz-Parsley – Trustee
Twila is the Mother of Millie D’Cruz-Parsley, who was diagnosed with MLD at the age of 6. Twila and her partner Phil wanted to help other parents who were going through the same turmoil as themselves, and initiated the founding of MLD Support Association UK with a grant of £5000 from the funds that had been raised for Millie.

Christine Longmire – Trustee and Secretary
I first met Vivienne and Rod Clark, Scott’s parents, on our regular commute to London. They discussed their son, Scott, who was in a care home near London and suffered from Adult-Onset MLD. It wasn’t long before I had the pleasure of meeting Scott on one of his weekends at ‘home’ with Mum and Dad. When Scott moved to a small care home locally the whole family became regular diners at the local hostelry on a Friday evening. We now meet up with the family regularly throughout the year end have, therefore, come to understand more about MLD. When asked to be a Trustee and Secretary of the charity I felt honoured, and that this was a small way that I could contribute to providing support to Scott’s and other similar families.

Bob Stott – Trustee
Bob was a work acquaintance of Phil Parsley, the partner of Twila D’Cruz, and father of Mille. Bob was assisting with raising funds for Millie’s treatment when he was asked if he would take the lead in starting a national charity to help other parents of MLD children. His background in Business Management, Concert production, and various roles in other charities and community groups, having provided him with the necessary experience.

Jackie Imrie (SRN, RSCN, MSc)
Jackie is a Consultant Nurse Practitioner who has been working with the Niemann-Pick UK (which is another Lysosomal Storage Disorder) for some time has now become one of our Trustees. Jackie is also a qualified Genetic Counsellor.

 

Scientific and technical advisory panel

Professor Timothy Cox (MD, FRCP, FMedSci)
Tim is not only our ‘Lead Patron’ but has agreed to become a member of our Advisory Panel. Tim is Professor of Medicine at the University of Cambridge, with clinical responsibility in acute internal medicine and metabolic diseases at Addenbrooke’s Hospital. His recent research has focused on the molecular pathogenesis and treatment of Lysosomal Storage Disorders.

Dr Brian Bigger (PhD)
Brian is the Group Leader of the Stem Cell and Neurotherapies Laboratory, Faculty of Medical and Human Sciences at the University of Manchester. They are involved in the investigation into stem cell and gene therapy treatments of neurological diseases.

Professor Simon Heales (BSc, PhD, FRCPath)
Simon is head of Chemical Pathology / Director of Newborn Screening at Great Ormond Street Hospital, and U.C.L. (Institute of Child Health) Professor of Clinical Chemistry. He has many years of experience in the successful diagnostic procedures required to confirm MLD, and related Lysosomal Storage Disorders, and has published in excess of 150 scientific papers.

Jackie Imrie (SRN, RSCN, MSc)
Jackie is a Consultant Nurse Practitioner who has been working with the Niemann-Pick UK (which is another Lysosomal Storage Disorder) for some time.  She is also a qualified Genetic Counsellor.

About us

MLD Support Association UK was set up to bring hope to families in the fight to eradicate Metachromatic Leukodystrophy (MLD). Our aim is to provide support by way of shared information from people in similar circumstances who have already experienced the effects of the condition and/or any treatments available.

MLD Support Association UK

MLD Support Association UK is a
Registered Charity Number 1150542

Patrons
Professor Timothy M Cox, MD, FRCP, FMedSci
Suzi Digby (Lady Eatwell) OBE
Iain Stewart MP

Contact

MLD Support Association UK
Floor 5
Amphenol Business Complex
Thanet Way
Whitstable
CT5 3SB

Tel: 07977 440809
admin@mldsupportuk.org.uk