Back to page

A Rare Kind of Walk

  • Target achieved!

      30 March 2024
    Main image

    I start the walk in one hour from now, and a couple of special people just tipped us over the $5k target. I know one of them was just waiting in the wings for this moment so he could claim all the glory but it is very special anyway!

    Here's an awkward selfie of me walking around Mt Eden from the day I cooked up this crazy scheme. 2 months later and it's a beautiful day today in Tamaki Makaurau - come out and enjoy it with me if you can, or share the campaign one last time with family, friends, doctors, influencers, politicians, or just the people at your local cafe.

    Thanks everyone for making this happen.

      0 comments  |  Login to leave a comment

  • Information for walkers

      3 March 2024
    Main image

    Here's a map for event day.

    Our walk is on Saturday afternoon during Easter Weekend, and we'll be meeting beside the carpark below the cafe which is accessible from the main entrance to Mt Eden.

    The first lap starts at 1pm, and we'll do one lap roughly every half hour. You can join us at any time during the afternoon. Do 1 lap, do 5 - it's over to you.

    If you want to join the main group simply wait for us at the rest stop until we come around again.

    There will be a first aid kit with James and another at the rest stop, where there will also be some shade, a seat, and water to top up your drink bottle.

    There are toilets in the carpark area, and the cafe serves ice creams and coffee - just in case you want to top up that energy between laps. There are 3 golden rules for the day:

    1. Respect the Maunga: take any rubbish home with you, and please stay on the paths & boardwalk.

    2. Respect other people: this is a busy public park and we share it with the whole community.

    3. Look out for each other: stay hydrated, stay safe, and make sure you rest when you need to.

      0 comments  |  Login to leave a comment

  • It's International Rare Disease Day!

      29 February 2024
    Main image

    You'd be forgiven for thinking I'd forgotten about my fundraiser, but actually I've simply had a crazy busy couple of weeks. A big part of that has been my work for Rare Disorders NZ. We launched two white papers at parliament last night at an event attended by researchers, clinicians, patient advocates, and government ministers. We've also been running events to build a research network, coordinate & support our support groups, and this morning I was interviewd on TVNZ breakfast. So much progress has been made, but there is also so much work to do. Thank you for your help and support, and please keep spreading the word!

      0 comments  |  Login to leave a comment

  • Gearing up for the big show

      9 February 2024
    Main image

    I'll be in Wellington on the 28th of March to launch Rare Disorder NZ's white paper on rare disorders in NZ at parliament, with data drawn from our survey of over 1000 patients and carers. The following day I'll be celebrating international Rare Disease Day with some of our support groups. RDNZ sent me this picture frame today so that people attending my walk can get a selfie at the last official event of Rare Disorders Month. Here's a photo of my cat Whiskey demonstrating it. There are still 49 days until I do this walk - plenty of time to share this story with everyone you know and help me push the fundraising total a little (or a lot!) higher. I'll be posting more about some of the big wins - and the big challenges - of Rare Disorders NZ and our rare people as the month progresses.

      0 comments  |  Login to leave a comment

  • You're all superstars

      1 February 2024
    Main image

    Just a couple of days ago I increased my goal to $2000 - but then you all went ahead and smashed that target so I'm having to raise it again. In the next few days I'll be reaching out to MPs, local media, and other notable people to ask them to join me on this walk - feel free to do the same. The more of us walking on the day the merrier. I'm looking forward to some great conversations as we loop around the mountain. Full map and other details will be coming in the next week. Let's keep the good vibes going!

      0 comments  |  Login to leave a comment

  • Why am I doing this?

      30 January 2024
    Main image

    I’ve got a rare metabolic disorder that has developed into progressive heart disease and over time it will also affect my kidneys and neurological health. In the last few years I’ve been hospitalised, de-fibrillated, operated on and medicated. It has been a tough ride.

    I decided back in 2019 and while I was in hospital having a pacemaker implanted that the challenge of rare disorders couldn’t be solved one at a time. There are just too many of them for that to work - we know of more than 7000 unique rare disorders and we keep identifying more.

    I wanted to be involved with a charity that was finding the big answers – one that was looking at how we provide healthcare, education, and community support across all rare conditions because it turns out that, most of the time, what people need isn’t a cure (even though those are nice) – rather, people like me need quality wraparound care. When we get this we can live longer and better lives.

    We - the volunteers and staff of Rare Disorders NZ - are making a difference everyday. We do it on the smell of an oily rag. I believe that the kind of work we do should be funded by the health system – not left to people who are already trying to navigate their own complex health journey – but this is where we find ourselves and we won’t give up.

    I need your help to keep doing this. Please share this today :-)

      0 comments  |  Login to leave a comment

  • New goal set

      30 January 2024

    Thanks to your generosity, I'm having to increase my goal. The first $1000 was raised so quickly that I'm going to see if we can get to $2000 before Rare Disorders Day (29th February).

      0 comments  |  Login to leave a comment

  • I've smashed the fundraising goal!

      30 January 2024
    Main image

    Incredible - after sharing my story on social media yesterday we quickly flashed past my first goal of $1000. Thank-you!

    That was a great feeling. I don't like sharing my story publicly (even though I continue to find myself doing so in everything from national newspapers to TV) - but if it helps me to spread awareness and raise money then it's worth doing.

    So, given that there is 2 whole months of fundraising to go, I'm going to raise the target by another thousand dollars. Let's see if we can smash past that too!

      0 comments  |  Login to leave a comment

  • Daily walking for health - and to reach my goal

      26 January 2024
    Main image

    A big part of my motivation to do this fundraiser was to give myself an incentive to get fit again despite the restrictions my heart disease has caused. This journey has been a real insight for me into the amount of hidden disability in our society and the challenges so many people face in their pursuit of a happy & healthy life. Many people with rare disorders live with a range of disabilities. Sometimes those are obvious, and sometimes not. For many, accessing appropriate care and support is an ongoing battle - just one of the many areas where Rare Disorders NZ advocates for improved understanding, funding, and care.

      0 comments  |  Login to leave a comment

  • I decided to set a goal

      22 January 2024

    I figure that if I can raise $1000 I will have done a good job. Of course, going past that would be nice too - so please share far and wide.

      0 comments  |  Login to leave a comment

  • Training in record heat!

      22 January 2024
    Main image

    I've been out walking this weekend, trying to build up the distance I can manage. I walked about 11km on Sunday (that's about half the total distance) but boy was it hot. Here's a photo of me standing on top of Mt Roskill looking overheated (Maungawhau Mt Eden is in the far distance behind me).

    I also finally launched my Facebook & instagram accounts for the fundraiser - so now I have no excuses left - time to share this journey and start contacting up the supporters list!

    I could do with your help - please share this page, or any of my social accounts, as far and as wide as you can. The more the better.

      0 comments  |  Login to leave a comment