Daniher’s Drive: fundraiser aims to find a cure for motor neurone disease
The fight to beat motor neurone disease has attracted overwhelming support from around the country and MND sufferer Neale Daniher is leading the charge.
Here Neale opens up about living with MND, plus his latest fundraiser, Daniher’s Drive.
How are you doing at the moment?
I consider myself fortunate in many ways. I was diagnosed in 2013, so I have already passed the average lifespan after diagnosis of 27 months. My four children are now all young adults. Some people with MND don’t get that chance to see their children grow up. My legs still work pretty well. I need help with things involving my arms and hands, like putting on a jumper. Breathing is a lot more difficult for me, my speech is slurred. But I haven’t lost my sense of humour.
When you were first diagnosed, how did you react?
Shock. Disbelief. I was 52, enjoying life and very healthy. To then be told I have a terminal illness that has no treatment or cure … that was hard.
It’s been a couple of months since this year’s Big Freeze. What did it achieve?
I describe MND as a “beast”. It’s hard for MND sufferers and for families living with it. It isn’t a rare disease. We wanted to drag it out of the shadows. The Big Freeze campaigns have done that. Our “Freeze Army” – from individual donors up to corporate sponsors like Chemist Warehouse – is making a difference. The 2017 Big Freeze raised $4.6 million. Now that the spotlight’s on MND, it’s only a matter of time before medical researchers will find a way to start beating it.
Where is MND research at?
We don’t think this disease is incurable – it’s just been underfunded. We already know that 10 per cent of MND cases are genetic. The other 90 per cent are seemingly random. Medical researchers believe MND might be many diseases, not just one. It means there needs to be many different fronts of research. FightMND has directed more than $14 million into 11 new research projects, including four drug trials in Australia. Now MND patients can be part of drug trials without having to go overseas.
There is such a build-up to the Big Freeze. How do you keep going afterwards?
I take a break. All of us in FightMND put everything into the months leading up to it. Even the team members who are fit and healthy are worn out at the end!
Did you expect to find something positive from such an insidious disease?
Adversity is a part of life for everyone. We have to find opportunity through it. When you make the most of it, it creates purpose. FightMND gives me a focus, which has helped me approach my own speed bumps.
What have you learnt about yourself and others through this?
Resilience has to be learnt. It is there in all of us but lays dormant until adversity triggers it into action. We discover strength we don’t realise we have. The skills I learned on the sporting field, such as perseverance, prepared me for my MND challenge. I’ve discovered how much care and goodwill is in the community. It only took awareness for people to start fighting with us.
What advice do you have for others who may be sick or going through hard times?
Life doesn’t promise to be fair. It just gives you opportunity. Even in hard times you need to find those opportunities and use them to do good for other people.
In the ultimate road trip, teams will embark on a four-day fundraising drive from October 12-15 to raise money for MND research. This year, teams will travel through the Goulburn Valley and scenic Riverina, in NSW, homeland of the Daniher family.
For how you can help, visit fightmnd.org.au