Jenny is the parent of two adults with Mucolipidosis III alpha/beta.

Jenny began her career in the rare disease field as the Field Officer for Lysosomal Diseases New Zealand in 1999. In 2004 she joined the Board of Directors for ISMRD “The International Advocate for Glycoprotein Storage Diseases.”She was instrumental in helping to set up The New Zealand Organisation for Rare Diseases in 1999 and played a large role in trying to gain access to therapies for New Zealand Lysosomal patients. In 2020 Jenny was awarded the New Zealand Order of Merit for her work in Research and Rare Diseases both in New Zealand and around the world.

Jenny has played a pivotal role in trying to find therapies for Mucolipidosis over many years, and 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

Jenny is delighted to be involved in setting up Cure Mucolipidosis and has more than 30 years’ experience as a patient advocate.