The story of Clive
I am Clive, an active, fit, and to the naked eye a healthy British Army veteran. In 2019, after several years of deteriorating function and strength in my hand and arm, I was diagnosed with Multifocal Motor Neuropathy or MMN. MMN is a rare neurological condition that affects motor function in the hands, arms, feet and legs. It’s a condition I can expect to gradually get worse over time, consequently my motto, more than ever before, is that life is all about “Making the Most of Now”.
Thanks to regular IVIG treatment my condition has improved. However, IVIG treatment is a very costly, time consuming, and sometimes painful treatment that isn’t always effective for those with the condition. It’s also not guaranteed to work forever. IVIG can also be subject to shortages , as it is reliant on donations of blood plasma.
More research is needed to better understand the causes of this rare condition, to improve the effectiveness of treatments, and hopefully find a cure.
In May 2021, I established Making the Most of Now, a project to raise awareness and funds for, research into MMN (www.makingthemostofnow.co.nz). I began work with the GBS|CIDP Foundation International and with the support of the GBS NZ Support Group, with the aim of the establishing the first dedicated MMN Research Fund and to raise $100,000 through the #RideForMMN campaign.
My #RideForMMN plan was to ride the Tour Aotearoa event that runs the length of the country from Cape Reinga to Bluff. However, reluctantly in light of the rise of the Omicron variant taking hold in NZ, I have decided instead to restrict myself to riding in the South island to try and limit the chances of coming into contact with this variant. My new route is closer to my home making it easier for me to self isolate if I do end up contracting the virus.
My new plan was to tackle the classic Kiwi Brevet route. However following ex Tropical Cyclone Dovi a major part of the route is closed. I have therefore designed an alternative 1,130km figure of eight route, the Te Tauihu Traverse. It’s shorter than the 3000km Tour Aotearoa route but still very arduous. I am aiming to complete the ride in 11 days.
Since starting work with the GBS-CIDP Foundation International, our partnership has led to the first online global meetups for MMN patients and the establishment of the inaugural MMN Awareness Month. Taking place this February MMN Awareness Month comprises a range of awareness and fundraising campaigns. To coincide with the start of my ride, people around the globe will be taking part in their own #rideformmn events. These range from group rides to static bike challenges in primary schools and gyms, plus a #rideformmn event in Antarctica to ensure we get people on every continent involved. We hope that by sharing photos or video of their rides on social media, these #rideformmn events will help share the MMN voice with new audiences and will encourage people to donate to the cause. With Rare Disease Day on the second day of my ride i will aiming to promote it in the run up to my ride and on the day itself.