Motor Neurone Disease Awareness Month – in review

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Each week in New Zealand at least two people are diagnosed with MND. This devastating disease impacts hundreds of families throughout New Zealand, yet it’s something many kiwis have little knowledge of.

Raising awareness of motor neurone disease is vital. With increased awareness comes increased understanding, which leads to more funding, more research, and eventually a cure.

Motor neurone disease touches many lives. The theme for awareness month 2020 was “It takes a team”, recognising the impact on and involvement of family and whanau, friends, health professionals, researchers, fundraisers, volunteers and supporters. It takes a team to live with MND.

Throughout June members of the team shared their personal stories, each week we focused on a different aspect of the “team”.

We heard from people living with motor neurone disease like Kylie, a mum and grandmother from Feilding, who not only is living with MND herself but has also lost her Dad, Aunty and Uncle to the disease.

Stories of those supporting a family member with motor neurone disease were shared. We learned about Mary’s experience hearing about her pregnancy and her mum’s MND diagnosis simultaneously. David Seymour, who is living with MND, reminded us that family members also live with impacts of the disease and need support too.

Health professionals who work tirelessly to improve the quality of life for people living with MND were showcased. These included the team at Canterbury DHB and Dr Janet Turnbull from Kapiti who was awarded a Member of the New Zealand Order of Merit (MNZM) in the Queen’s Birthday Honours list.

During National Volunteer Week, we celebrated those who support MND New Zealand’s work – volunteers, fundraisers, and supporters. Highlighting people like Taylah West who has helped organise a Walk 2 D’Feet MND event, and challenge event fundraiser Sara- Jay (Jimmy). Less than 7 % of MND New Zealand’s costs are covered by government funding . Fundraisers, volunteers, donors and supporters are an immensely important part of the team.

Global MND/ALS Awareness Day is observed on June 21st each year. With social distancing still a very valid concern, this year we encouraged people to make this a virtual day with “My Cuppa Tea for MND”, posting selfies to our event page of their at-home cuppa, and donating the price of a good cuppa. We also held MND New Zealand’s first national Virtual Appeal, .

Supporters donated and fundraised over $7000 through My Cuppa Tea for MND and our online Virtual Appeal! Thank you to everyone who supported us through My Cuppa Tea for MND, those who donated to the Virtual Appeal, and those who encouraged others to donate. It takes a team to live with the impacts of motor neurone disease.

Motor Neurone Disease Awareness Month may be over for another year, but work supporting people living with MND doesn’t stop. Ma tini ma mano ka rapa te whai – many hands make light work, and we encourage people to continue to join the team supporting those living with motor neurone disease. We invite you, your friends, family and colleagues to join the team of supporters by liking our Facebook page and signing up for our newsletter here.

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