The current members of the LDNZ board are as follows:

John Forman
Chairperson

Profile: John is a parent of adult twins who both have a rare Lysosomal disorder, Alpha-Mannosidosis.

He has a long history as a volunteer and as a paid worker in disability services and related advocacy agencies. He is enthusiastic about the use of communications technology to reduce isolation and improve the health of those affected by rare diseases by improving networks among families and professionals.

John works as Executive director of the NZ Organisation for Rare disorders and is on the Board of several local and international rare disease and advocacy organisations.

Jenny Noble
Secretary/Treasurer

Profile: Mrs. Jenny Noble is the parent of two young adults with Mucolipidosis Type III (Pseudo-Hurler Polydystrophy).

Since the diagnosis of her two children Jenny has spent many years searching and advocating for innovative ways to manage the complications of Mucolipidosis. Through this advocacy Jenny has built up strong international networks with Professionals, Families and other support groups to improve outcomes for families with Lysosomal Diseases.

Jenny is currently a Trustee and Secretary for ISMRD “The International Advocate for Glycoprotein Storage Diseases” and is the Project Manager for the New Zealand Organisation for Rare Diseases. Though not trained in health or science, she is one of the co authors of The Osteodystrophy of Mucolipidosis Type III and the Effects of Intravenous Pamidronate Treatment published in the Journal of Inherited Metabolic Diseases.

Dr Dianne Webster
Director
National Testing Centre
Auckland Hospital

Profile: Dianne is a scientist with a lifetime working with metabolic diseases particularly in the laboratory diagnosis of people with likely symptoms, and newborn screening of healthy babies.

She is active regionally and internationally with the Australasian Association for Inborn Errors of Metabolism, the Human Genetics Society of Australasia and the International Society for Neonatal Screening, with particular interests in high-level policy and quality of service.

She has led the development of the clinical metabolic service in New Zealand and presently manages the service, as well as the newborn metabolic screening programme, the biochemical genetics laboratory at Auckland City Hospital and the antenatal serum screening programme.

Dr David Palmer
Principal Research Officer
Animal and Food Sciences Division
Lincoln University
Canterbury

Profile: Dr D N Palmer, Principal Research Officer, Lincoln University.

Since 1980 my research has concentrated on animal forms of Batten disease, particularly in sheep, studied to gain insights into the human diseases. The discovery that the different forms of Batten disease are protein storage diseases was made this way.

Recent studies by our group suggest a role for inflammation in the disease and we plan to test anti-inflammation therapy on the sheep. Major support for these studies has come from the US National Institutes of Health and other support from the Neurological Foundation.

During this work, and through networking and parent-scientist meetings, I have grown to appreciate the human dimension of Lysosomal diseases, and want to do what I can to share what I know.

Philip McKinstry
Trustee

Profile: Philip is the parent of Christopher who has Hurler Syndrome. Christopher underwent a bone marrow transplant in December 1999 at the age of one.

Philips background is in Law and Insurance and has a particular interest in statutory compliance.