Our team

MLD Support Association UK is very lucky to have a dedicated team behind us. Our six Trustees meet every two or three months and deal with the everyday running of the Charity, organising Conferences and Fun days, developing the Registry, and keeping the Website and information leaflets up to day. All are involved because they have a family member with MLD, or are supporting others with MLD. Our Scientific and Technical Advisory Panel have many years of relevant experience and are always willing to help support the Charity at Conferences, and by giving scientific input when needed. Our Patrons all support our aims and help where they can, but a special mention goes to Professor Timothy Cox, our “lead Patron”, who has tirelessly helped in all areas of the Charity – we are immensely grateful for his continued support.

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, 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 30 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 diagnosis, bravely facing serious operations and procedures and following these living in care homes, together with frequent visits to his parents. He is now a largely fit happy person, taking pleasure in singing his 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.

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.

Nicola Elson
Trustee and Secretary

Nicola lives in Cumbria with her husband Ian and three children, Connie, Joe and Miriam. Connie was diagnosed with Metachromatic Leukodystrophy in June 2014 at the age of five and a half and Joe a month later at three and a half. Before Connie and Joe’s MLD diagnosis, Nicola worked as an accountant for a media company, now she’s a stay-at-home mum caring for her three children, particularly Connie who is now completely dependent on others for her ongoing care.

Lesley Warrington
Trustee and State Registered Nurse (SRN)

Lesley enrolled at Farnborough Hospital in Kent and later converted to SRN at the London Hospital where she spent over 10 years working in a cardiac ICU department. Lesley joined Fulham Preparatory school in 2004 as a school nurse and is now their child welfare officer. As an element of her C.P.D. (Continuing Professional Development), Lesley has made a written record of our 2018 Family Conference.

Jackie Imrie
(SRN, RSCN, MSc)

Jackie is a Clinical Health Advisor with a background of nursing and metabolic medicine 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 Clinical Health Advisor with a background of nursing and metabolic medicine 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.