Hi, my name is Mark Chapple & I have, for many decades now, led a life impacted by Huntington’s disease in my whānau.
Last March I cycled from Cape Reinga to Bluff with some close & keen friends following a set course called Tour Aotearoa. It took us 23 days to cover the distance & conditions were kind. We took the opportunity to use our ride as a fundraiser to raise awareness of Huntington’s disease & the people it impacts in our community. The recipient of the money we raised was the Centre for Brain Research at the University of Auckland where Distinguished Professor Sir Richard Faull leads an internationally renowned program of research in Huntington’s disease along with the Neurological Foundation Human Brain Bank. Through the very generous donations of our supporters, I was honoured on behalf of our team to present a cheque for $31,000 at the National Huntington’s disease association conference in Auckland in May 2022, the first conference held since before Covid. Thank you to you all.
We enjoyed our trip so much we are now looking to ride from East Cape to Cape Egmont. This is another set course across the widest part of the North Island. It’s an annual event called the Kopiko Challenge that we expect to take about 9-10 days. We aimed to start March 7th however conditions in the North Island may delay our start date slightly. The track is 1,100kms long & includes 17,000m of climbing, which is about the equivalent of climbing Mt Everest twice. We will carry a GPS tracker so our supporters can follow our progress.
The team are using this ride as another fundraising opportunity with the same purpose of raising awareness of Huntington’s disease, but this time with a focus on the young adults & children that grow up in a family impacted by Huntington’s disease, which can be devastating. The recipient of our donation for this ride is the Huntington’s Disease Youth Association of New Zealand (HDYO-NZ).
To help us achieve our fundraising goal, you can donate to our GiveaLittle event https://givealittle.co.nz/cause/1000kms-for-huntingtons-youth
A previous fund raiser of a less strenuous nature (growing my hair for a year & then shaving it off) raised $10,000 back in 2017. That money was also donated to our local association with the youth in mind.
My involvement & passion for youth support extends back 20+ years as a volunteer on numerous week long annual camps for youth from all over New Zealand who came from families impacted by Huntington’s disease. Those camps were due to the hard work & effort of my “Huntington’s angel” & her devoted whānau. The camps ran their course & ceased when she retired. Now, the keen young team at HDYO-NZ are in the early stage of resurrecting the camp so keep an eye on this website.
The camp was, and will continue to be, a fun environment with outdoor activities but also a safe place for individuals to meet their peers, bond & make friendships, share experiences of living with Huntington’s disease & learn about the disease, what support is available & the latest developments in research & human drug trials. I hope the funds raised from our ride will help individuals to be able to attend the camp & for HDYO-NZ to raise the phoenix (camp) from the ashes.
Enjoy following our ride on Instagram (the link is hope_for huntingtons_disease). The biggest help to the team on the bikes & at HDYO-NZ is to use your social media skills & spread the word & help raise awareness & of course all donations will be gratefully received.
Arohanui
