Christchurch Cyclist To Tackle 3,000 Kilometre Bike Trail To Fundraise For World-leading Huntington’s Disease Research.

Christchurch man Mark Chapple will set off on a cycling adventure on 22 February with four close friends to raise funding for the world-leading Huntington’s disease research being undertaken by Sir Richard Faull and his team at the University of Auckland’s Centre for Brain Research.

The 3,000-kilometre self-supported ‘brevet’ mountain bike ride known as Tour Aotearoa has been in Mark’s sights for many years, so this month he and his companions will ride from Cape Reinga to Bluff with the goal of achieving a $10,000 research funding target along the way.

Helping Mark to drive his pedals will be the faces and memories of all the courageous people associated with Huntington’s disease that he has crossed paths with since his late wife Monique was diagnosed through a genetic test in 1995. Monique died ten years ago after losing her battle with Huntington’s disease. The decade remembrance is a motivator for Mark to complete the ride this year.

Monique’s gradual decline and loss of function due to Huntington’s disease still evokes some painful memories for Mark, and he hopes that through our world-class research here in New Zealand, the havoc and heartbreak of Huntington’s disease can be prevented for other patients and their families in the future.

Monique was a happy-go-lucky person with a stoic nature and took everything in her stride from the day she was diagnosed. Through her final years however she suffered a traumatising psychosis, followed by dementia. These symptoms of Huntington’s disease effected a devastating transition from the lively and life-loving Monique whose passion for people and travel is reflected in the enormous network of friends that reached every corner of the world.

Mark cared for Monique at home over the years until full-time hospital care was deemed the safest option for her; she was just 33 at that time. Mark says they focused on making happy family memories as much as possible, and he is grateful for the wonderful care she received in the specialist hospital that helped to optimise their time together as a family.

Throughout the course of Monique’s health decline, Mark shared learnings of their journey by speaking at a number of national Huntington’s disease conferences, and it was at one of these events that he met the “remarkable” Sir Richard Faull.

Sir Richard and his team are globally recognised as one of the change-makers at the forefront of Huntington’s disease research and meeting him gave Mark immense hope for the future. Hope, Mark says, is critical for both the person with the disease, and for their families, when clinical treatment options are currently few and far between.

Huntington’s disease is a devastating degenerative, genetic neurological disease, hallmarked by its wide-ranging symptoms including significant movement, cognitive and psychiatric decline over many years. It is a cruel disease that manifests differently with each patient, so research being undertaken both in New Zealand and around the world has great complexities to work with. Sadly, there is no cure. Treatment options are the focus of many labs, including Sir Richard’s, and researchers are also determinedly working on hopeful concepts of slowing down the progression of the disease. Achieving this would give a window of time for treatment discovery, and perhaps even the elusive cure.

Sir Richard’s research has an established and dynamic point of difference to that in other research labs around the world: his research is undertaken on the tissue of the precious, donated human brains of patients who have died with Huntington’s disease. And further, the research team records all of the correlating clinical information specific to each person, and shares close relationships with the patients and their families during their lives.

Sir Richard says these “partnerships” are the cornerstone of his team’s research. “These truly remarkable people who have Huntington’s disease – and their Mums and Dads and partners and children - are as much a part of our research team as our scientists and clinicians. Different areas in our brains are responsible for the relevant functions of our movement, swallowing, breathing, thinking, feeling, forming and keeping memories and for mood and psychiatric control. When these areas are affected by disease, we lose the functions they are responsible for managing. Being so generously gifted the brains of people we have known throughout their disease progression gives us incredible insights into how the disease has affected their brain and therefore their functions. We have seen first-hand how Huntington’s disease manifests symptomatically for them. Having that knowledge is absolute gold for our research, and quite simply, our work would not be at the level it is today without these very special people.”

The Centre for Brain Research has received 166 bequeathed brains from Huntington’s disease patients since 1981, contributing exceptional findings to hundreds of published research studies including those in collaboration with leading research groups in Australia, Europe and the USA. Every study lends to the widening pool of information that is now leading to clinical trials in patients, including those in New Zealand.

Monique’s brain was donated to Sir Richard’s research when she died in 2012, furthering the lineage for Huntington’s disease research – a deeply meaningful contribution to science - which began with her mother Michelle’s brain donation in 1996. Sir Richard invited Mark to visit the Centre for Brain Research soon after Monique’s brain bequest, and Mark says that day changed his life. “I was in awe of the researchers and the research environment at the Centre. Sir Richard often uses the word ‘custodians’ when he refers to receiving bequeathed brains for research, and I always found solace in that as a term of respectfulness and caring. I am deeply grateful that Monique lives on in Sir Richard’s important work - her legacy is giving real hope for those who live with Huntington’s disease, and for their families.”

Mark’s living legacy to Sir Richard’s research is to help raise as much funding as possible, as well as raising awareness of Huntington’s disease at each stop throughout the 3,000-kilometre ride. Monique will be on Mark’s mind each day of this cross-country trail-ride, and he looks forward to visiting Sir Richard and his research team again with a fundraising cheque at its completion.

“While I’m up at the Centre for Brain Research I will take time to acknowledge and reflect that this remarkable place is where such an important part of Monique and Michelle rests. I know Monique would be immensely proud of their continuing contribution, as we all are.”

Notes:

Mark fundraised $10,000 in 2017 for the Christchurch Huntington’s Disease Association to support young people from families impacted by Huntington’s disease.

Links:

To donate to Mark’s fundraising endeavour, go to https://givealittle.co.nz/cause/hope-for-huntingtons-disease-through-research

To follow Mark’s Tour Aotearoa Brevet journey and fundraising efforts on Instagram, go to @hope_for_huntingtons_disease

To find out more about the Centre for Brain Research, go to https://www.auckland.ac.nz/en/fmhs/research/cbr.html

For information about Huntington’s disease, go to these links:

https://www.hdauckland.org/

https://en.hdyo.org/

Centre for Brain Research

The Centre for Brain Research (CBR) at The University of Auckland is a unique partnership that builds on three pillars of strength: world-class neuroscientists across the university, skilled clinicians throughout Aotearoa New Zealand and dedicated community support. Established in 2009 by Distinguished Professor Sir Richard Faull, the overarching mission of the Centre is to translate novel findings from the laboratory through to the clinic for the benefit of patients and their whānau.

Tour Aotearoa Brevet

Tour Aotearoa Brevet was created by the Kennett brothers - Jonathan, Paul and Simon - who are pioneers of mountain biking and bikepacking in New Zealand. Over 1000 people ride the Tour Aotearoa route each year. The ride is a dynamic mix of off-road trails, back-country roads, some stretches of highway and sweeps of 90 Mile Beach. The rules of the ride are set in stone – the Brevet must be completed between 10 and 30 days (no more and no less) – and because it is unsupported, you must carry on your bike or person all that you need for the duration.

Further information about the Tour Aotearoa Brevet can be found here: http://www.touraotearoa.nz

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