Proceeds from November sales of our 'Key Rings for Good' (pictured below) will go to Motor Neurone Disease (MND) NZ - an organisation very close to our heart. We've asked our good friend Serena Irons to write a guest blog for us to share her experience and shed some light on what MNDNZ do. At the end of November, we'll donate $3 from every key ring sold to MNDNZ.
Valentine’s Day 2020. The day our entire family’s world got turned upside down when my brother was diagnosed with Motor Neurone Disease (or MND). I was sitting at the hairdressers when my Dad rung me with the news, and although I didn’t know a lot about this disease, the one thing that was in my head from previous discussions about it was that there was no cure. It took all my effort to not start researching it then and there, because I knew what I was going to find, and I wanted to hold it together at the hairdressers.
MNDNZ (www.mndnz.org.nz) states that “Motor Neurone Disease (MND) is the name of a group of diseases that cause the death of the nerve cells (neurones) that control the muscles that enable us to move, speak, swallow and breathe. With no nerves to activate them, these muscles gradually weaken and waste away. This causes progressive loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. The progression varies significantly from person to person.” As there is no cure, MND has a 100% fatality rate.
Whilst there is no cure, there are treatments to help slow the progression of this disease and help make life easier for those diagnosed with it. Research is being done all over the world to try and find why MND occurs and how to slow it down, stop it and prevent it. 90% of cases are spontaneous, and 10% are inherited. There is not currently a definitive reason for what causes MND, which means there is no way to know how to prevent it.
There are a four different types of MND, with ALS, or Amyotrophic Lateral Sclerosis, being the most common form. You may have heard of this one as there was the Ice Bucket Challenge on social media to bring awareness to it. ALS is also what Stephen Hawking had. He was diagnosed with it when he was 21 years, and lived with ALS for 55 years. This is incredible as the average life expectancy for someone living with ALS is two to five years. However obviously this varies greatly. There was a man on Queer Eye who was diagnosed with MND 8 years ago, who is still walking, talking ,eating, and basically has his independence.
ALS is the type that my brother was diagnosed with. I always believed that we should look for the silver linings in the cloudy days so I am maintaining that Michael is going to be the next Stephen Hawking of architecture! We’re going to be keeping him around for a long time to be doing amazing things, creating and designing wonderful buildings! Michael has moved back home from where he lived in Wellington, with his wife and my niece. Another silver lining, as he has lived away from home for 14 years, so it’s so nice to have him here, so we can support him and shower him with love. My children are loving having their cousin around more as well!
MNDNZ, who I mentioned earlier, are such an incredible resource for people with MND and their families. They are the only organisation in New Zealand focused on MND support, information, advocacy, awareness and research. They rely almost entirely on the generosity of the public, as they receive only 7% of their funding from the government and need to raise over $1 million every year to continue this amazing work.
A big part of their fundraising is through their yearly event Walk 2 D’Feat MND. It started in 2014 and has been held every year since. It is run by volunteers and 100% of the funds raised go to support MNDNZ. It is a walk that is safe and accessible to all. It is of course to raise funds for MNDNZ, but also a chance to bring together people who have been impacted by this disease, raise awareness, support those who are living with MND and to remember those who have passed from it.
I have taken on the role as Walk Leader for the Invercargill event which I am very excited about. Throwing myself in to raising money and awareness for MNDNZ has been a coping mechanism for me. Throughout my research, it has told me not to go looking for a cure, but to enjoy the time you have with your loved ones. I’m not the kind of person to sit there and hope for something to come to me, and obviously I am not a neurologist so I won’t be finding a cure any time soon, but I’m doing what I can to bring awareness. Plus, you never know, that $5 or even $1 raised could be what was needed for some ground-breaking discovery!
Currently there are 6 walks organised for this Summer – Tauranga, Greymouth, Palmerston North, Invercargill, Christchurch, and a virtual one for those who’s towns aren’t holding one! Information and registration can be found at https://mndwalk.org.nz/. I’m not 100% sure of the other walks, but the Invercargill one will have some merchandise you can purchase including soft toys, and wristbands! There will also be a raffle which will be drawn after the event with donations from some wonderful businesses including Love From Seventeen!
If you are unable to attend a Walk but would still like to donate, there is the other option of donating to my personal fundraiser. Prior to organising the Walk for Invercargill, I decided to set myself a challenge and to raise money myself. I was going to “Lace Up” and run / walk 10km in the Queenstown Marathon. Unfortunately, my son is having an operation on the Tuesday before, and I’m not 100% sure if I will be able to make it. I’m hoping that I can, but if I’m not comfortable leaving him so close to being in hospital, or there are complications, I will instead be walking the 10km around Invercargill! I had originally planned to raise $1000, but with the support of some amazing people, I crushed that within 2 weeks! This can be found at https://fundraiseyourwaymndnz.everydayhero.com/nz/lace-up-for-als?fbclid=IwAR2Fn4cKxCjL8UJUASmWVdq1WMQEZxSI3olvZc07Zpv-PnCiUeV5I-FKFYU
The biggest thing I want to get out of these fundraisers, aside from money for a wonderful cause, is to bring awareness to MND. When talking to people a lot of them haven’t heard of MND, until you say “it’s what Stephen Hawking had”. The year 2020 has been incredibly tough for everyone, and some people may not be able to donate. It would be so empowering to be able to say to someone “my brother has MND” and that person know right away what it is and what it means! Please take some time, do some reading about MND, and share the information about our Walks! Knowledge is power!