Celebrities speak about their MND heartbreak

Celebrities speak about their MND heartbreak

• Annabel Langbein's mother had MND

• Bernadine Oliver Kerby's father had MND

• Brett McGregor's father had MND

• One in every 200 deaths in NZ was caused by MND in 2011

• Celebrities participate in new TV awareness campaign

“I didn't even know what motor neurone disease was when my mother was diagnosed with it,” says Annabel Langbein, one of the well-known New Zealanders who appear in a new awareness campaign for motor neurone disease (MND), launching online today and on television on Monday 5th September. (View the online video here: https://youtu.be/Dy2CKa5ZsCQ.)

The campaign encourages New Zealanders to take part in the Walk 2 D'Feet MND events being held simultaneously in 14 New Zealand towns and cities on Sunday 25th September to raise money for MND research and support. Each walk is less than 5km on flat terrain that is child- and wheelchair-friendly.

Bernadine Oliver Kerby, whose father died of MND just a year ago, says her father had also never heard of MND prior to his diagnosis. “He said to the doctor, 'Cut my leg off. If you cut my leg off, will that fix me?' That's how helpless he felt.” Grant Kerby was a farmer in the Waikato who died aged 68, just 14 months after he was diagnosed with MND.

MND is a fatal neurological disease that often presents as a shocking diagnosis in otherwise healthy people, frequently in middle age. The disease destroys the nerve cells (neurones) that control the muscles you use to walk, talk, hug, hold, speak, and eat. Eventually, you can't move at all. The majority of people with MND die within three years of symptoms appearing.

“It was 18 years ago that my dad was diagnosed with motor neurone disease,” says Masterchef Brett McGregor. Terry McGregor, a former Iron Man and Coast-to-Coaster, died of MND aged just 50. “The disease moved really fast,” says McGregor. “It was a real struggle for everybody. Dad was this person that never got sick.”

The awareness campaign was initiated by Dr Claire Reilly, who herself has MND and appears in the video. “Because most people with MND have such a short lifespan, and have rapidly increasing levels of disability that make it difficult for us to work and get around, MND remains a little-known disease, although it is not rare.”

In New Zealand in 2011, one in every 200 deaths was caused by MND.

“My partner's aunt was diagnosed with MND in 2009,” says Tamati Coffey. “The worst part was actually understanding that with it, her mind was still all there. She was still witty and funny, but she had to type it all into an app on her iPad and then press 'Voice'.”

“A close friend's wife was diagnosed with motor neurone disease a few years ago,” says Sir Richard Hadlee. “It just came out of the blue. Eight months later she passed away.”

The lifetime risk of developing MND is up to one in 300. In New Zealand, that means that of the 61,079 people who attended the 2011 Rugby World Cup final at Eden Park, 203 may eventually develop MND.

“Each year more than 100 people die from MND in New Zealand,” says Beth Watson, President of MND NZ. “Over time it has affected many thousands of New Zealand families. This year we're very lucky that some very well-known Kiwis, including some who have been personally affected by MND, are lending their support and sharing their stories, helping us to raise awareness and much-needed funds for care and research.”

The video campaign features Brett McGregor, Annabel Langbein, Bernadine Oliver Kerby, Tamati Coffey, Sir Richard Hadlee, Te Radar, Nigel Latta, Urzila Carlson, and Simon Dallow. Also appearing are Dr Claire Reilly, who has been living with MND for ten years, and Jac Kluts, Christchurch manager of The Radio Bureau, who was diagnosed with MND last year.

The campaign supports the 14 Walk 2 D'Feet MND events being held on Sunday 25th September. Hundreds of people who have been personally affected by MND are expected to join Walk 2 D'Feet MND events in Auckland, Hamilton, Tauranga, Hawkes Bay, Waipukurau, Taupo, Whanganui, Masterton, Wellington, Golden Bay, Christchurch, Hokitika, Dunedin, and Invercargill. The Masterton, Golden Bay and Hokitika events are being organised by women who themselves are living with MND.

• Register to walk or donate to your local Walk 2 D'Feet MND at www.mnda.org.nz/walk2d.asp

• View the online awareness video here: https://youtu.be/Dy2CKa5ZsCQ

• To interview Brett McGregor or for more information please contact
MND NZ Communications Manager Annabel McAleer (021 840 108, ajmcaleer@gmail.com) or MND NZ President Beth Watson (027 499 1780)

• To learn more about MND see below and visit MND NZ’s website at www.mnda.org.nz

• Like our Facebook page for Walk updates: www.facebook.com/mndanz

• Download high-res photographs (Credit: Jessie Casson) here: https://www.dropbox.com/sh/4m7qcghxdsmwb88/AADFeSrOwNBTCgtLtZgv2rlya?dl=0

About the Walks 2 D’Feet MND

Walks 2 D’Feet MND are being held in 14 cities and towns nationwide on Sunday 25th September as the main annual fundraiser for the Motor Neurone Disease Association of NZ (MND NZ). Half of the funds raised will go towards supporting MND research in New Zealand, and the other half will go to MND NZ to continue its crucial work providing support for people with MND and their carers.

MND Facts

• Motor neurone disease is the name of a group of diseases that destroy the nerve cells (neurones) that control your muscles. With no nerves to activate them, the muscles you use to walk, talk, hug, hold, speak, and eat gradually stop working. Eventually, you're locked in a body that can no longer move.

• MND can affect anyone. It is an uncommon, but by no means rare disease. The incidence of MND is similar to multiple sclerosis, but MND is much less common (prevalent) because people with MND usually have a very limited lifespan. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4109189/ and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093130/)

• In 2011, one in 200 deaths in NZ was due to MND. (Ministry of Health and NZ Statistics)

• The lifetime risk of developing MND is up to one in 300. (http://link.springer.com/article/10.1007%2Fs00415-006-0195-y - table 2)

• A study in Nature in August predicted the worldwide incidence of MND to increase 69% by 2040. (http://www.nature.com/articles/ncomms12408)

• An economic analysis of MND in Australia by Deloitte in 2015 estimated that the total cost of MND per person is A$1.13 million. Applied to NZ we could estimate a total cost of MND to NZ of
$358 million in 2015 (approximately 300 people with MND).

• The prevalence of MND in some areas of NZ may be particularly high (https://www.nzma.org.nz/journal/read-the-journal/all-issues/2010-2019/2015/vol-128-no-1409/6434). Some of the funds raised by last year's Walk 2 D’Feet MND are helping develop an MND Registry in New Zealand. This will give us accurate information about incidence and prevalence of MND all over NZ and will tell us whether NZ does indeed have a higher rate of MND.

• This year in May, New Zealand-born racing driver Neil Cunningham, a James Bond stunt driver who had appeared as The Stig on TV show Top Gear, died of MND. He was 52 and a father of three. In April, British comedian Ronnie Corbett died of MND.

• The most common type of MND is Amyotrophic Lateral Sclerosis, or ALS. It is known as ALS in America.

• Awareness of MND was raised following the phenomenally successful ALS/MND Ice Bucket Challenge social media campaign in August 2014. More than 17 million videos of celebrities and supporters dousing themselves in icy water were posted to Facebook and were watched a total of 10 billion times. More than US$220 million was raised globally for research.

• The MND Association of New Zealand (MND NZ) is a small not-for-profit organisation whose main purpose is to ensure that people living with MND have the best quality of life possible, by helping our clients access the medical expertise and equipment they need, and providing practical and emotional support. MND NZ is dependent upon fundraising and donations to continue its service.

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