What’s the walk all about?

HEY, MY NAME IS MIKE, AND THREE YEARS AGO I WALKED THE FULL LENGTH OF NEW ZEALAND’S TE ARAROA, ONE YEARS AGO I RODE A BICYCLE AROUND TASMANIA, AND IN EARLY 2023 I RODE A BICYCLE ALONG AUSTRALIA’S LONGEST RAIL TRAILS TO RAISE AWARENESS AND MONEY FOR NYSTAGMUS. IN 2024 I WILL BE WALKING THE LENGTH OF CROATIA'S LONG DISTANCE TRAIL FOR THE SAME CAUSE.

So why am I doing this?

I am hoping to raise awareness of nystagmus, to help those that have the condition, or those with family or friends with the condition; and to raise money for further research into nystagmus. Nystagmus is a condition that causes involuntary, rapid movement in one or both eyes, and it will often cause vision problems, including blurriness. These conditions can make simple daily tasks extremely difficult, and in some cases, near impossible.

I myself have Congenital Nystagmus (CN). "And what is congenital nystagmus!?" I hear you ask…well….

Congenital = Present from birth

Nystagmus = Taking from straight from the Nystagmus Network's homepage “Nystagmus is a complex visual impairment, characterised by involuntary eye movements, affecting focus and depth perception. (There is currently no cure).”

Which is what we want to change…… 

Nystagmus is caused by a huge range of underlying conditions, from isolated problems in the eye, to Albinism and other disorders which affect multiple parts of the body. Only a small number of patients ever find out what the cause is for them. So what will I be doing to help!?

For my Te Araroa walk in 2019/2020, with all your amazing contributions, we were able to raise £2,323 for Nystagmus Network, £2,092 for Gift of Sight and NZ$1,117 for Blind+Low Vision NZ. For my ride around Tasmania in 2021/2022 we raised £1,000 for Nystagmus Network, £1,006 for Gift of Sight. Furthermore, my bike ride along the Brisbane Valley Rail Trail in early 2023 raised £381 for Nystagmus Network and £349 for Gift of Sight. My goal was to raise £5,000 for each charity each fundraiser, so this time out I will be continuing on the mission to raise money to help them reach these targets. I will be raising money for two charities; Gift of Sight, Nystagmus Network. I am hoping to raise at least £10,000, £5,000 for each charity.

My Inspirations

My inspirations behind wanting to do these epic adventures and challenges, as well as creating this blog and sharing my experiences comes from several different avenues.

First off, I usually want to be working on something that can benefit, help or inspire others.

Secondly, I've always wanted to find a way to explain to others what it is like for me living with nystagmus, without forcing it down anyone's throat. I've been writing a travel blog for several years now, so it seems stupid that it's taken me as long as this to realise that I should also be writing a blog about my experiences with nystagmus. A way to share it with people in a light-hearted way, that's easy to read and take in on one's own convenience.

And my final push, six years ago my sister had her first child. My nephew, Archie, was born and diagnosed with nystagmus. I am the first in my family (that we know of) that has nystagmus, and now Archie has it, so I wanted to do everything in my power to make it easier for my sister to understand the condition now, and also make it easier for Archie when he's older so that he might have a better idea of what to expect in life. But mainly, to never let his nystagmus hold him back. I want to prove to my nephew and everyone else that you shouldn't let your nystagmus hold you back...if you wanna do it, then work hard and do it!

My Mum sent me an article about Richard Osman, an English television presenter, producer, comedian and director, explaining what it was like for him living with nystagmus. It was a great read for me, and I probably related to about 95% of what he had to say. I posted the article on my Facebook profile and it was the first time that I posted something on my Facebook page about nystagmus as I thought it'd give my friends a better understanding of what day to day life was like for me. Also, after reading it I thought to myself "wait….I write, I can do something like this"

And then about a year after that I decided that I wanted to do more, but what? It took me a while to decide, but with me being the way I am it had to be something big. So here it is, this is my website dedicated to me walking the length of New Zealand’s Te Araroa and all the subsequent enduring adventures that followed; but it’s also here to create awareness of nystagmus; fund raising for continued research and support for people with the condition; somewhere to share my experiences of living with nystagmus and a place for people to share their experiences….and finally, if I’m lucky, a place to inspire someone to not let nystagmus, or any other conditions that they may have, hold them back.

And finally, you reading this, a new supporter. Your support is what is going to help me take them extra steps on the days where I'm struggling to walk any further. Your input and support is what will get me through this long journey. I aim to complete this challenge, I don't want to let myself down, I don't want to let the charities down that I am raising money for, I don't want to let the people down that will benefit from these funds, and now I also don't want to let you down.