This week Newshub has shone a light on motor neurone disease (MND), exclusively revealing a 'wonder drug' treatment will now be available to Kiwis and the medical breakthrough made by Auckland scientists.
We also spoke to the husband and caregiver of a patient who is campaigning for MND to become a notifiable disease.
We have received plenty of feedback, many of you asking how you can help. The following is for you.
In June 2024, as part of international awareness month, Motor Neurone Disease NZ will again launch its annual fundraising campaign to encourage people to make time count for people living with MND and their loved ones.
People with MND know how their life will end - trapped inside a body that no longer works, unable to speak, move and, eventually, breathe. It is a terrifying fate.
In Aotearoa, more than 400 people are living with MND at any given time - a disease that affects people from all communities, ages, ethnicities, and occupations.
While MND is uncommon, it certainly is not rare, with New Zealand having the highest rate of MND than anywhere else in the world.
There is no truly effective treatment and no known cure, and the average life expectancy is two to five years.
When raising awareness about tough diseases, there's no denying that conversation and connection go a long way.
Recognising the power of kōrero, Motor Neurone Disease NZ is highlighting the disease, and again launching its fundraising initiatives: Cuppa Tea for MND and the iconic MND Ice Bucket Challenge to encourage Kiwis to shine a light on MND by fundraising and raising awareness of the disease and all its challenges.
Motor Neurone Disease NZ is the only charity focused on improving the quality of life, funding research and campaigning for people affected by MND in NZ - but relies on donations to do so.
Staff do this through providing free personalised practical, emotional, and social support, and providing accurate and reliable information about MND so those affected can best manage their journey through the often-rapid progression of the disease.
Proceeds from the MND Action Month campaign will go towards growing the support, information, and advocacy for those affected today, as well as funding research for a future free from MND.
Ways to get involved in June 2024
- Cuppa Tea for MND: Host a morning or afternoon tea for your family, friends, workplace, club, or school and ask for a donation to support MND NZ. It can be a simple mid-morning break in the staff room or go luxe with a high tea.
- MND Ice Bucket Challenge: Appoint a willing recipient to have a bucket of ice water tipped over them once you've reached your fundraising target. Another way is to recruit a selection of willing staff or group members and ask for a donation per vote.
To sign up or find out more visit www.mndactionmonth.org.nz.
About MND
- Motor neurone disease (MND) is a fatal, rapidly progressing neurodegenerative disease that robs people of their ability to move, talk, and eventually breathe
- MND can affect adults at any age but most people diagnosed with MND are over the age of 40, with the highest incidence occurring between the ages of 50 and 70
- Little is understood about the causes of MND. There are currently very few treatment options available, and no cure
- There are around 400 people living with MND in NZ at any given time. The average life expectancy is three to five years after diagnosis
- On average two people will die from MND each week and three people receive a diagnosis
- The incidence rate of MND in NZ is higher than the rest of the world - researchers are trying to find out why so we can change it
- Funds are needed to research causes, identify treatments, and provide ongoing support
