Motor Neurone Disease- Latest News

Global MND/ALS Awareness Day is June 21, 2016
• Walks 2 D'Feet MND to be held in 12 New Zealand cities and towns on September 25th
• Three inspiring women with MND take the lead
• Well-known Kiwis join upcoming campaign

“It was 18 years ago that my dad was diagnosed with Motor Neurone Disease,” says Masterchef Brett McGregor, one of the many well-known New Zealanders who are supporting the Walks 2 D'Feet MND, being held simultaneously in 12 New Zealand towns and cities againthis year.

McGregor's father, a former Iron Man and Coast-to-Coaster, died of Motor Neurone Disease (MND) aged just 50. “It's changed everything since, for our mum, us brothers and especially our kids,” says McGregor. “He would've been a really great grandfather.”

MND is a fatal neurological disease (also known as ALS) that causes the death of the nerve cells (neurones) that control the muscles that enable us to move, speak, swallow and breathe.

MND/ALS Global Awareness Day is on Tuesday, June 21. “MND Global Awareness Day is about recognising the people in New Zealand with this relentless and unkind disease, and saluting them for the daily courage they find,” says MND NZ President Beth Watson. “People with MND show amazing strength and stamina, both mental and physical.”

This resilience and tenacity can be seen in three inspiring New Zealand women who are living with MND, while raising awareness and funds for MND care and research through this year’s Walks 2 D'Feet MND on September 25.

Merle Bradley, the organiser of the Hokitika Walk 2 D'Feet MND, this year completed 24km of the Abel Tasman National Walk in a locally engineered off-road ViMo wheelchair.

Eco Yanaga, organiser of the Golden Bay Walk 2 D'Feet MND, continued to participate in half-marathons after her diagnosis with MND and this year completed a skydive.

The national manager of the Walks 2 D'Feet MND, Dr Claire Reilly, conceived the idea of the nationwide event in 2014, and has extended it every year since. This year Dr Reilly has also organised a TV awareness campaign, launching in August, that features Brett McGregor along with several other well-known New Zealanders whose lives have been affected by MND.

“The problem with a disease like MND is that it is often so rapid, so debilitating, that those affected never get a chance to be heard,” says Dr Reilly. “I have been luckier than most, in that my disease has progressed at a slower rate, so I wanted to take that opportunity and raise as much awareness as I can, while I can.”

This year, the 12 nationwide Walks 2 D'Feet MND are being organised by communities of people whose lives have been affected by MND, and by people who are living with MND themselves.

“We're really excited that this year each of our regions is organising their own event,” says MND NZ president Beth Watson. “It will mean each walk will have its own unique flavour that represents the local MND community.”

MND currently affects 300 New Zealanders, with about 100 people diagnosed every year. It is a rapidly progressing disease in most cases, causing increasing levels of disability and loss of independence.

Hundreds of people who have been personally affected by MND are expected to join the walks, in Whangarei, Auckland, Hamilton, Napier, Waipukurau, Masterton, Wellington, GoldenBay, Christchurch, Hokitika, Dunedin, and Invercargill. Each walk will be between 3km and 5km on flat terrain that is child and wheelchair friendly. Last year close to 2500 people joined Walks 2 D'Feet MND in six cities.

The Walks 2 D'Feet MND are stillseeking a major co-sponsor for this year's event. “It’s not too late to get on board. We’re keen to hear from anyone able to help,” says Dr Reilly.

ENDS

© Scoop Media