The CMT Friends UK group has provided desperately needed contact for so many people living with the condition. Our motto is: ‘We are warriors one and all, fighting for understanding, fighting for a cure, fighting for each other.’
Peter and his team of seven daring ‘warriors’ will ride the world’s fastest zipline, Velocity 2, in Penrhyn Quarry on 10 September 2022. The zipline will catapult the daring participants to speeds of 100mph for 1555 metres. Six of the eight team members live with Charcot-Marie-Tooth disease (CMT), a rare condition that affects the peripheral nerves which connect the brain and spinal cord to the rest of the body.
Peter, from Suffolk, brought the team together through a Facebook group he created to unite and support people in the UK with the condition. More than a thousand people are now members of the CMT Friends UK group, who Pete calls ‘warriors.’
Before his diagnosis, Peter worked as a successful chef, cooking for Jamie Oliver and even HRH The Queen. Peter shares, “I now use a wheelchair and live in an accessibly adapted bungalow. All sensations in my hands and feet have disappeared for me, and my hearing loss is worsening. Unfortunately, I don’t work anymore, but that’s much safer than me working in a professional kitchen! The support I’ve had from MDUK has been a lifeline and inspired me to create the support group and to do something really positive to turn things around for others too.”
Now, Peter and some of his friends from the online support group are tackling the world’s longest zipline. “I’m excited to do the zipline, to say the least. It’s brilliant to meet up with friends from our CMT Facebook group all while raising funds for such a great cause. When I received my diagnosis eight years ago, I felt completely isolated from the world, but MDUK has given me so much help and support. Even now, their support is second to none,” says Peter.
Caroline Ballisat, from Hertfordshire, is one of the team members taking on the zipline. “I can no longer walk or stand for long due to Charcot-Marie-Tooth disease,” Caroline shares, “and it has also affected my 17-year-old daughter, Hannah, who has also faced the same diagnosis and subsequent surgeries. It has restricted what I do but I have adjusted to it and found ways around things.”
She continues, “I am really excited about doing the world’s fastest zipline. I love that I can still do things like this even with a disability. It will be great sharing the experience of the zipwire challenge with new friends who also have CMT, and all whilst raising money for a worthy cause.”
You can support Peter and his team of CMT Friends UK fundraisers by visiting their JustGiving page and donating to their campaign.