MC_Elections 2008
 
   

Management Council Elections, 2008

 

The nomination procedure for GOLD’s Management Council closed on May 16th 2008. As the number of candidates does not exceed the number of seats available on the Management Council, all candidates shall be deemed duly elected and shall take office from the conclusion of the Annual General Meeting 2008 to the many groups who voted in the Management Council elections this year. 

Individuals nominated for and elected to the Management Council:

Candidate Nominated by Seconded by
Ms Rhonda Buyers
National Gaucher Foundation
2227 Idlewood Road, Suite 12
Tucker, GA 30084
USA

Lysosomal Disease Centre of Children's Hospital Medical Centre of Cincinnati
Division and Program in Human Genetics
Children's Hospital Medical Center
3333 Burnet Avenue
Cincinnati, Ohio 45208
USA

Authorised representative:
Dr Gregory Grabowski MD

Not required. Already Management Council member
Professor Timothy Cox
Professor of Medicine, Head of Department of Medicine
University of Cambridge, Addenbrooke's Hospital
Cambridge U.K

Gauchers Association, UK
3 Bull Pitch
Dursley
Gloucestershire
GL11 4NG
Authorised representative:

Authorised representative:
Mr Jeremy Manuel, OBE

Not required. Already Management Council member
Dr Roberto Giugliani
Head of Medical Genetics Service
Hospital de Clinicas de Porto Alegre
Brazil

Lysosomal Diseases Research Unit
Department of Genetic Medicine
Children, Youth and Women's Health Service
72 King William Road North Adelaide, SA 5006, Australia
Gloucestershire
GL11 4NG

Authorised representative:
Professor John Hopwood

Not required. Already Management Council member
Dr Maurizio Scarpa
Consultant Paediatrician Department of Pediatrics, University of Padova, Centre for Rare Disorders
Padova, Italy

Blood-Brain Barrier Group
Hodgkin Building
Guys Campus
Kings College London
London
SE1 1UL

Authorised representative:
Dr David Begley

Not required. Already Management Council member

 

Personal Biographies of Management Council Nominees:

Ms Rhonda Buyers
National Gaucher Foundation
2227 Idlewood Road, Suite 12
Tucker, GA 30084
USA


Rhonda has been the chief operating officer of the National Gaucher Foundation for over a decade. She has an excellent understanding of this particular patient population, the first LSD population to have a treatment, and therefore knows a great deal about clinical trials, drug accessibility, reimbursement issues (in the US), compassionate use, competing treatments, etc. She also has strong experience working with industry, developing patient education and awareness programs domestically and internationally. She has the ability to consult with other patient advocacy organizations around administrative issues and she also can be very helpful to clinical professionals about seeing the patient side of things.

Professor Timothy Cox
Professor of Medicine, Head of Department of Medicine
University of Cambridge, Addenbrooke's Hospital
Cambridge U.K


Professor Timothy Cox, Professor of Medicine, University of Cambridge and honorary Consultant Physician at Addenbrooke’s Hospital, Cambridge graduated in Medicine from London University in1971, after which he gained his MSc in Biochemistry, MD in Cell Biology/Medicine and then MA, MD in Medical Science from Cambridge University. His career has successfully combined clinical work and medical science; he is a founding fellow of the Academy of Medical Sciences.

He is joint editor of Editor of the Oxford Textbook of Medicine and has over 190 publications in his professional interests. These include inborn errors of metabolism, particularly the LSDs for which a National Service Centre has been established at Addenbrookes Hospital, where he is Clinical Director. Tim has been influential in pioneering treatments for LSDs, notably Gaucher Disease and has been an investigator in clinical trials. His passion for involving patients and patient organisations in the development of therapies was instrumental in him and Hans Aerts forming the European Working Group for Gaucher Disease, and encouraging the involvement of the 24 patient groups which comprise the European Gaucher Alliance. He has worked with governments and pharma companies to ensure funding for treatment but continues to direct a laboratory research programme in Cambridge

Dr Roberto Giugliani
Head of Medical Genetics Service
Hospital de Clinicas de Porto Alegre
Brazil


Dr Giugliani is Professor at the Department of Genetics of Federal University of Rio Grande do Sul (UFRGS) and Chief of the Medical Genetics Service of Hospital de Clinicas de Porto Alegre, Brazil. Roberto Giugliani is a Medical Doctor, specialist in Clinical Genetics, obtained his MSc and PhD degrees at University of Sao Paulo and performed post-doctoral training in London, Genova and Paris. Has acted as President of the Brazilian Society of Clinical Genetics, President of the Latin American Society of Inborn Errors of Metabolism and Neonatal Screening and President of the Latin American Network of Human Genetics (RELAGH). Roberto is presently Researcher level I A (top) of Brazilian Council for Development of Science and Technology, Director of the WHO Collaborating Center for the Development of Genetic Services in Latin America and Chairman of the Latin American School of Human and Medical Genetics (LASG). He is a member of 13 scientific societies, has supervised the postgraduate studies of over 50 MScs and PhDs and has over 200 papers published, most of them in international peer-reviewed journals.

Dr Maurizio Scarpa
Consultant Paediatrician Department of Pediatrics,
University of Padova, Centre for Rare Disorders
Padova, Italy


Maurizio Scarpa is Head of the Lysosomal Unit, at the Centre for Rare Disorders, Department of Paediatrics, University of Padova, Padova, Italy. Dr Scarpa received his medical degree and doctorate from the University of Padova Medical School, Padova, and went on to specialize in paediatrics at the same institution. He completed a postdoctoral fellowship at the European Molecular Biology Laboratory (EMBL) Heidelberg, Germany, and at the Howard Hughes Medical Institute, Institute for Molecular Genetics, Baylor College of Medicine, Houston, TX, USA.

Dr Scarpa has extensive experience in the fields of molecular biology and biochemistry. He has vast clinical experience in the diagnosis and treatment of lysosomal storage disorders (LSDs) and neurometabolic diseases, and is especially interested in developing diagnostic assays and new approaches for the treatment of LSDs.

Currently, Dr Scarpa is the Chairman of the European MPS I Registry and, together with Dr. David Begley King’s College of London UK, the funder and Scientific Coordinator of the “Brains For Brain” Research Consortium, a Paneuropean Task Force on Brain and Neurodegenerative Lysosomal Storage Diseases.resigned as a member of GOLD's Management Council following her resignation from the National Tay Sachs & Allied Diseases Association, to take up the position of Director of Public Policy at Amicus Therapeutics.

Biographical details of the current Management Council can be found here.

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