HFNZ NATIONAL COUNCIL MEMBERS:
President – Deon York
Deon has been president since 2007 and a volunteer with this organization since the late nineties. He is a member of the World Federation of Hemophilia’s (WFH) Board of Directors (2010 -) and serves on a range of WFH committees, including chair of Fundraising and Resource Development, chair of the Youth Leadership Advisory Committee, and co-chair of the National Member Organization Capacity Building Committee.
Deon works at the New Zealand Health Quality & Safety Commission as programme manager for the Commission’s consumer engagement programme. He has previously collaborated with the University of Auckland in producing a follow up monograph to the Bleeding Nuisance, which investigated the experience of living with haemophilia in the context of new technologies. An update to this work is currently being developed. Deon has also served on the National Haemophilia Management Group.
Vice President - Catriona Gordon
Catriona and her husband Eugene live in Rotorua with their three sons. Their two eldest boys have severe haemophilia A. Catriona has been involved with the Foundation as a committee member of the Midland Branch since 2005, and as a council member since 2008. She is currently Vice-President and the Safety and Supply Officer for the foundation. As such, she sits on the National Haemophilia Management Group as the patient representative. Catriona has alsp been involved in the Foundation’s twinning programme with Cambodia.
Catriona is a qualified lawyer and runs her own law practice in Rotorua.
Vice-President – Richard Scott
Richard is a father of two boys, Andrew and Toby, Andrew has Severe Haemophilia A and has had inhibitors. Richard is married to Lynley Scott. The Scott family have been actively involved in the Foundation at both a local and regional level since 2000. Richard has served on the Northern committee for several years and has previously been chair and delegate for the Northern region. Richard has been involved in the twinning with Cambodia and has also been involved in the Parents Empowering Parents (PEP) programme and is now a trained parent facilitator. Richard and Lynley have prepared a poster presentation about inhibitors and the treatment of inhibitors with Rituximab and the benefits they found as a family with the successful reduction in the inhibitor. They have also been part of a book about inhibitors Managing Your Childs Inhibitors a practical guide to parents, written by Laureen Kelley which is based on parent experiences including Lynley and Richards comments.
Richard works as a transport analyst and he has worked in the past for ACC as a case manager and has a diploma in rehabilitation.
Treasurer - Hemi Waretini
Hemi is based in Auckland and is an active member of the HFNZ, contributing as Treasurer of the Northern, Piritoto and Youth MRG committees. He also regularly participates at MRG events and as a team leader at national camps.
Māori Delegate – Te Whainoa Te Wiata
Tēnā koutou te whānau o HFNZ. My name is Te Whainoa Te Wiata, I have severe haemophilia A, I am a father of two and I am currently living in Auckland with my lady Rosalie. I am in my third year as a student of Linguistics at the University of Auckland, a Reo Māori tutor at The Unitech of Auckland and I am a musician. I feel privileged to have the opportunity to be a part of the National Council on behalf of Piritoto. This a great chance to learn from those who I have looked up to for many years and hopefully grasp a better understanding of the way things are run, my only hope is that I will be able to contribute effectively to the team.
Ngā mihi nui kia koutou katoa.
Central Delegate – Stephanie Coulman
Stephanie lives in Wellington. Her main motivation for being involved with the Foundation is through her son who has severe haemophilia A. She hopes that by being involved she can ensure the Foundation continues to be a strong, energetic and vibrant organisation, providing education, support and social networks as he learns to manage his condition himself.
As the Central Region Delegate and Chairperson, Stephanie endeavours to represent the wider needs of all Central region members. Stephanie is a committed and dedicated team player who is always willing to take on extra tasks.
Southern Delegate - Theresa Stevens
Northern Delegate - Liam Brodie
Midland Delegate - Linda Mellsop-Anderson
Youth Delegate - Courtney Stevens
Seconded Member – Steve Waring
Steve is the owner and Managing Director of direct marketing company KiwiFirst. Established in 1993, KiwiFirst has been undertaking nationwide fundraising on behalf of HFNZ since 1996. KiwiFirst is also responsible for national fundraising programmes for Make-A-Wish NZ and NZ Riding for the Disabled. Both Steve and KiwiFirst were also heavily involved with the Child Abuse Prevention Society (now JIGSAW Family Services) as a fundraiser and board member. Steve brings valuable insight in relation to the Governance model from his six years on the Child Abuse Prevention/JIGSAW Board and received an “Outstanding Service Award” at his retirement from the JIGSAW Board in 2009.
Steve has severe haemophilia A and was involved in the campaign for recognition and compensation for people with haemophilia who contracted hepatitis C through bad blood. Steve lives in Wellington with his wife Annette and has three grown up children, two living and working in Wellington and one studying in Otago. He has a passion for anything to do with boats.