NZORD is hosting the inaugural New Zealand Rare Disease Day Awards in 2019 to honour and recognise the rare disease champions in our community.

These Awards will be presented to five outstanding New Zealanders who have made a positive impact through patient support, advocacy, research and clinical practice. The Awards will be hosted by Her Excellency the Rt Hon Dame Patsy Reddy, Governor-General of New Zealand and Patron of NZORD on Thursday 28 February at Government House.

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Lifetime Advocacy Award – Lady Gillian Deane

Gillian Deane was awarded the inaugural Rare Disease Day Lifetime Advocacy Award in recognition of the extraordinary difference she has made through long-term advocacy in rare diseases in New Zealand. Gillian has been awarded for her excellent work over the past 40 years of involvement with health and support organisations for people with rare conditions and disabilities.

Gillian is a health and wellbeing pioneer and a founding trustee of NZORD. She served for many years until her departure from the board in July 2014. Previously she was Patron of Mary Potter Hospice and is joint Patron of IHC New Zealand, along with her husband Sir Roderick Deane. Gillian is the national co-ordinator of the New Zealand Rett Syndrome support group; her daughter Kristen was diagnosed with Rett syndrome and died at age 27.

Gillian was awarded the Arts Foundation of New Zealand Patronage Award in 2008, and was a recipient of a Civic Award from the Wellington City Council. Gillian and her husband Sir Roderick created the Deane Endowment Trust, in memory of their daughter Kristen, to support a wide range of arts and culture organisations. She is also a devoted conservationist, having regenerated a large area of wetlands which has now been declared a Heritage site.

“Gillian is a pioneer in health support in New Zealand and is a staunch advocate, parent and philanthropist.”Nominator

Patient Advocacy and Support Award – Allyson Lock

Allyson Lock was awarded the Rare Disease Day Patient Advocacy and Support Award in recognition of the extraordinary difference she has made through advocacy and patient support in genetic and rare diseases in New Zealand. Allyson has been recognised for her excellent work over the past eight years as President of the New Zealand Pompe Network, all while managing her own health as a patient with Pompe disease.

Allyson was diagnosed with Pompe disease in July 2010, a rare condition without funded treatment in New Zealand. Since she was diagnosed it has been Allyson’s goal to get funded treatment here, not just for herself but for everyone currently diagnosed, and for those who will be diagnosed in the future.

Allyson was instrumental in getting New Zealand patients on the BioMarin trial, the Amicus trial and liaised with Genzyme to get patients on their International Compassionate Access Program. Allyson uses social media, emails, letters, and attendance at meetings, both locally and overseas, to highlight the problem of funding for the treatment of all patients in New Zealand. She continues to fight for “Fair for Rare”.

“She is a tireless fighter for the Pompe community and I truly believe she deserves this Award for all her years of fighting for us.”Nominator

Research Award – Associate Professor Mervyn Merrilees

Professor Mervyn Merrilees was awarded the inaugural Rare Disease Day Research Award in recognition of his significant contributions to rare diseases in New Zealand. His research has focused on the rare progressive infiltrative lung condition called lymphangioleiomyomatosis (LAM) that affects women, usually between the ages of 25 to 45. Through processes yet to be understood, smooth muscle cells of unknown origin invade the lungs and increasingly compromise the transfer of oxygen, to the extent that lung transplantation may be required. There are currently 30 women with LAM in New Zealand, but likely that others remain undiagnosed.

Professor Merrilees has been a long-term supporter of the LAM community. He has been involved with LAM research and patients in New Zealand for two decades, from the time the underlying genetic basis was discovered through to the recent rapid advances leading to clinical trials. The perspective that he has been able to bring to understanding LAM has been greatly helped by his wider investigations into the role of the extracellular matrix and inflammation in more common diseases, such as heart disease. Recently he co-authored a paper on LAM with colleagues at the University of Pennsylvania in which they presented findings to show that a new approach, involving stimulation of the immune system to attack LAM cells, may have promising potential as a new therapy. Professor Merrilees is the Scientific Advisor for the New Zealand LAM Charitable Trust.

“Professor Merrilees has walked alongside LAM patients and their families for decades.” Nominator

Health Professional Award – Dr Dianne Webster

Dianne Webster was awarded the inaugural Rare Disease Day Health Professional Award in recognition of the extraordinary difference she has made to the rare disease community in New Zealand in her role as a clinical scientist. Dr Webster has built a world-class neonatal screening programme for New Zealand ensuring that diagnostic and treatment services are available for babies found by the programme.

Dr Webster has been active for many years in the establishment of both written and physical standards. She has worked with the International Society for Neonatal Screening and the Clinical and Laboratory Standards Institute on quality standards and policies for newborn metabolic screening. Dr Webster also received the Queen’s Service Order in 2007 for services to public health, particularly paediatrics, the International Society for Neonatal Screening Guthrie Award in 2008 for contributions to newborn screening internationally, and in 2015 the Clinical and Laboratory Standards Institute Award for Excellence in Global Leadership in Standards Development.

“She’s my hero in all of genetics when it comes to having made a difference.” Nominator

Future Champion Award – Brittany Vining

Brittany Vining was awarded the inaugural Rare Disease Day Future Champion Award in recognition of her commitment to supporting families living with a rare condition. Brittany is a passionate supporter of the rare disorder community and NZORD. She has completed a Bachelor of Science, majoring in genetics, with a double minor in psychology and exercise sport science. Brittany hopes to go on and complete a Masters in Genetic Counselling now that she has finished her undergraduate studies at Massey University.

Brittany has a passion for supporting and advocating for patients with genetic disorders and ran her first marathon in September 2018 to raise money for NZORD. She also volunteers in the Emergency Department with St John in a patient support role, and is the Secretary of the Manawatu Science and Technology Fair organising committee.

“Brittany’s commitment to working with people, solving problems and helping families are attributes that will benefit the rare disease community in future.” Nominator