mnd ISSN 2357-173X newsSPRING 2019 NEWSLETTER OF THE MOTOR NEURONE DISEASE ASSOCIATION OF NEW ZEALAND INC www.mnd.org.nz Announcing a very special partnership PHOTO: ETNZ If you caught Seven Sharp on 17th Greg Horton is living with the condition. vitally important tradition: christening June, during MND Awareness Greg is also a member of the MND New the new yacht “Te Aihe” (the Māori word Week, you would have seen a Zealand National Council. for dolphin). It is the first AC75 to touch Grant Dalton says: “Through Greg the water. big announcement! MND New you can see the amazing work MND Marcus had this to say about his key Zealand became the official charity New Zealand does for the 300 plus New role on the day: “Our family have been partner of Emirates Team New Zealanders who are living with MND, fans of Emirates Team New Zealand for Zealand. We’re delighted and so we are really proud to be supporting many years, and it was a great honour to deeply honoured to have begun this them and everything they do.” be able to represent MND New Zealand significant relationship. MND New Zealand representatives in the launch of our latest America’s Cup were able to attend the official launch yacht. And doesn’t she look fast!” Emirates Team New Zealand have of the first Emirates Team New Zealand We look forward to cheering on witnessed the devastation of MND first- boat on September 6th at Auckland’s Emirates Team New Zealand when they hand: teammate and former Emirates Viaduct Harbour. defend the America’s Cup in 2021 and Team New Zealand Director and current Marcus Gerbich, pictured, who is living thank them for supporting MND New Director of America’s Cup Event Ltd (ACE) with MND, helped with a special and Zealand. From the Chair and General Manager 2019 has certainly much-needed practical assistance, experience to shaped up to and we thank Fulton Hogan for their their respective be a big year dedication and generosity. roles. for MND MND Awareness Week 2019 in June Although New Zealand (p. 13) was packed full of a variety of the end of the and our activities and announcements. We were year is fast community! honoured to be named as the Official approaching, After our Charity of Emirates Team New Zealand we’re still whole team met for the 36th America’s Cup – quite a looking forward in March for strategy feat for our small organisation. We are to some significant day, we took the ideas generated along looking forward to working with the upcoming events. Our major annual with feedback received through our team on some exciting projects to help community event and fundraiser, Walk MND Community Survey to develop our raise awareness of this devastating 2 D’Feet MND, is just a few days away Strategic Plan 2019–2022 (p. 14) which disease, and hopefully much-needed as this issue goes to print. We’re looking launched in July. funds. forward to sharing more about this in the It was important to collaborate MND New Zealand is committed next issue, and hope you and your family with our community to shape the to encouraging and supporting MND were able to attend. organisation’s future direction and research, and during Awareness Week we The MND New Zealand Research growth. The focus of the next three launched our Research Strategy 2019-22. Conference on 9th December is shaping years is on improvement, development, At the launch event in Auckland we up to be an exciting day with a star- and sustainability. We’re confident that proudly hosted guest speakers Professor studded line up of local and international through this plan we can keep working Chris Shaw, Dr Emma Scotter, and Kerry speakers. This is the first event of its type hard to maximise the positive difference Walker, who presented “An Update on in New Zealand, and we’re expecting we make in the lives of those living with MND Research – Homegrown & Abroad” a full house, so please get in quick to MND. (p. 6). The well-attended event was a secure your seat. Recently we released the MND great start to our busy research calendar, We couldn’t have had such a big year Community Survey results and our which featured the MND New Zealand without the continued support from response (pp. 8–9). We apologise for Hui at Parliament in September (p. 10–11) you, the MND community. A huge thank the delay in releasing these results, but and includes the upcoming inaugural you to all our volunteers, supporters, it was important to have a clear idea MND New Zealand Research Conference fundraisers, and team for your valuable about the actions we would take before in December (p. 6). We are confident that contributions in making 2019 such a doing so. Through the strategy we have these significant events will increase successful year so far. committed to addressing the needs and interest in, and awareness of, MND We rely almost completely on issues identified in the survey. Thank you research in New Zealand. the generosity of the New Zealand to everyone who took part in the survey We were very fortunate to be community through donations and and shared their experiences with us. selected as this year’s charity recipient at fundraising to continue doing the vital Unmet practical support needs September’s Grocery Charity Ball (p. 5). work we do, providing a free personalised for many people living with MND, The event raised a whopping $245,000, service to people living with MND and their families, and carers was a key and a huge thank you goes to everyone their families. feedback theme. In May, we were who helped make the event such a huge It is essential that we keep working proud to announce Fulton Hogan as success by donating auction items or together to continue providing high our Foundation Corporate Sponsor (p. helping out on the night. quality support, making a positive 4) and their commitment to a three- While lots has been happening in difference in the lives of those living with year partnership, providing additional the community, there have also been MND. assistance to people living with MND. a couple of changes at National Office. Thank you! The “Fulton Hogan MND New Zealand We welcomed Patricia Bell as Grants Support Fund” is available to all clients Administrator in July, and Sarah Tora as and their families via our support team. Communications Manager in August. We hope the fund will help provide They both bring vast amounts of Lucy & Carl The Fulton Hogan MND New Zealand support fund is here! 4 Grocery Charity Ball 2019 supporting MND New Zealand 5 Charlotte’s story 7 Findings of the MND Community Survey are in! 8 In this Hui called to bring light to issues faced by people with MND 10 issue MND Awareness Week 2019 13 Our Strategic Plan for 2019–2022 14 Hawkes Bay helping ourselves – two years on 15 Local research examines environmental risk factors for MND 17 2 • MND NEWS • SPRING 2019 Kitty and Georgie gather their friends and glam up for a good cause After learning about motor neurone disease, Kitty and Georgie were keen to get involved with supporting MND New Zealand. Kitty said, “We were shocked to hear that MND New Zealand only receives 8 per cent of its funds through government funding!” The two friends put their heads together to brainstorm ideas on how they could help people with MND. Soon, the fantastic idea of holding a Reunion Ball for their university friends was born, with proceeds going to MND New Zealand. On Saturday 31st August, 220 people dressed in their finest outfits gathered at Christchurch’s Show Gate Room at Riccarton Park to catch up for a night of fun and entertainment in support of MND New Zealand. The event was a resounding success, raising a whopping $6,100! Kitty had this to say about the Reunion Ball: “We had Reunion Ball organisers Kitty & Georgie such a fantastic Reunion Ball gathering all our nearest and dearest to celebrate good health and friendship – but the cherry A huge heartfelt thanks to Kitty and Georgie, all their helpers on the top was doing it for a worthy cause. We hope after our and everyone who attended the Reunion Ball for choosing to event there are 220 young people now aware and willing to support MND New Zealand – we appreciate it! Fundraising is support MND initiatives, starting with the Walk to D’Feet MND vital to helping us continue to provide free personalised support on the 10th of November!” to people with MND. Action shots of the evening Meet our new team members Patricia Bell joined MND New Zealand Sarah Tora started with us as as Grants Administrator in July this year, Communications Manager in August, working two days per week. working 32 hours a week. After working in the non-profit sector Sarah holds a Bachelor of for fifteen years, Patricia has built up a Communication Studies and has worked wealth of experience, holding roles in in the corporate world for 22 years, fundraising and communications as well most recently in communications roles as grant writing, which she has been at KiwiRail, Progressive Enterprises doing for the past nine years. (Countdown) and Westpac. Coming to us most recently from RNZSPCA, Patricia has “I am really enjoying the change of pace and learning more also worked with The New Zealand Breast Cancer Foundation, about the non-profit sector. It’s great being able to use my skills Asthma NZ, Ako Mātātupu: Teach First NZ, YWCA, and the in a meaningful way to help people living with MND and their Auckland City Mission.