Motor Neurone Disease Awareness Day
MEDIA RELEASE 20 June,
Motor Neurone Disease Awareness Day - fieldworkers provide advocacy and support
Each year around 100 New Zealanders are diagnosed with Motor Neurone Disease, a fatal degenerative illness that slowly robs people of the ability to carry-out simple, everyday tasks.
Tomorrow, June 21, is Global Motor Neurone Disease Awareness Day and the MND Association of New Zealand is highlighting the work of its free nationwide fieldwork service, which is available to everyone with MND as they battle this disease for which there is no cure.
“Every day we’re inspired by the lives led by people living in New Zealand with Motor Neurone Disease,” says MND Association NZ National Manager Grant Diggle. “Our fieldworkers support people and their families living with MND by providing advocacy and support.”
People with Motor Neurone Disease (MND) slowly lose the ability to move, speak and swallow as the nerve cells, or neurones, which control these functions degenerate and die.
Living with MND is incredibly challenging, says South Island fieldworker Kate Moulson who has been a fieldworker with the association for nearly 10 years. “If I can make their journey easier and less stressful, it’s very rewarding.”
Kate is one of seven fieldworkers, employed by the Association, who provide the service which is available free to the approximately 300 people in New Zealand with MND.
Key to the fieldworker’s role is helping people with MND and their families navigate the health system, including accessing available support. “Quite often people that get MND are fit healthy, and have very little medical history. A lot of my focus is on making sure people are linked into the right services at the right time.”
Worldwide MND associations are marking today by joining together for the online One Global Team, One Goal campaign. Athletes from sporting codes, including rugby, soccer, tennis and swimming, have been invited to show their support using hashtag #GlobalTeam.
Mr Diggle says there is great support from sports people of all levels and abilities in New Zealand. “Today the Association is proud to announce another great example of a New Zealander whose experience of MND has led them to do something quite extraordinary.”
Queenstown’s Carey Vivian will embark on a 4000km off road charity bike ride Race Against Time in February. The event is in recognition of doing everything before it’s too late, says Carey. “That’s the message my Dad received when he was told he had MND two years ago.”
The aim of the challenge is to also promote awareness of MND. The six-week event will see Carey criss-cross the country several times as he travels from Cape Reinga to Bluff. “I researched all I could and decided that I needed to do something tangible for MND NZ, an organisation that relies on a very small pool of funds in order to help those suffering around the country”.
To show your support you can donate via Fundraise Online or visit Carey Vivian’s Race Against Time. Funds raised will help the Association provide practical day-to-day support to New Zealander’s living with MND through its fieldwork service. You can also join us on Facebook at www.facebook.com/mndanz
• Global Awareness Day is Saturday 21 June 2014. Every year since 1997, the International Alliance has celebrated 21 June as the global day of recognition for MND or ALS (amyotrophic lateral sclerosis, the name given to the disease in the United States) – which affects people in every country across the globe.
• 21 June is a solstice – a turning point – and each year the MND community undertake a range of activities to express their hope that this will be another turning point in the search for cause, treatment and cure of this most challenging disease.
Opportunities for media interviews
• As part of this year’s event we are offering media an opportunity to talk with a local MND Association of New Zealand fieldworker. Watch our video clip of South Island fieldworker Kate Moulson: https://www.youtube.com/watch?v=Uz0l5Ljn2zA
• Interviews with Carey Vivian, carrying out Race Against Time, can also be arranged.
• Ground-breaking research is also taking place at Auckland University’s Centre for Brain Research. Dr Emma Scotter, who has recently arrived from King’s College in London, will lead research into around 4000 drugs to see if any of the compounds can influence, or change, the development of Motor Neurone Disease in the brain.