Back in April 2024 many of you kindly sponsored my jump out of a moving plane. At the time I was unable to give Jen my caring wife the chance to jump with me.

But I have found a way to make it up to her a flight on a Zip Wire on 28th August 2026. We are going to fly down side by side down the mile long 100mph+ Zip wire at Penrhyn Quarry.

We would also like you to join us in spirit by sponsoring us, helping us to raise £1000 for the Herefordshire & Worcestershire MND Group.

Since my diagnosis of Kennedys Disease the members of the group, who meet at St Richards Hospice in Worcester every month, have helped us both through difficult times and are now part of our family.We would like to dedicate our Zip Wire Experience to Terry Hill in fond memory, a lovely man that always made us laugh, however hard it got

Any support you can give will be appreciated, photos and videos will be made available after the event to all sponsors on request.

What is Kennedy’s Disease?

Kennedy’s Disease, or X-linked motor neuron disease, is a rare inherited neuromuscular disorder also known as X-linked recessive bulbospinal neuropathy or X-linked spinal and bulbar atrophy. It is an adult onset, progressive disorder, characterised by the degeneration of lower motor neurons within the spinal cord and brainstem. This causes progressive weakening and wasting of the muscles particularly in the arms and legs.

Humans have 46 paired chromosomes, with two sex chromosomes that decide gender and 44 chromosomes that dictate other factors. The mother’s egg always provides a female sex chromosome known as ‘X’, while the father’s sperm contributes either an ‘X’ (female) or ‘Y’ (male) chromosome. A pairing of ‘XX’ sex chromosomes means the baby is a girl, while ‘XY’ means the baby is a boy. Kennedy’s disease is caused by a genetic mutation of the androgen receptor gene on the X chromosome.

Since the disease is recessive, the presence of the normal gene on the other X chromosome means that girls don’t develop the symptoms of disease, because the normal gene overrides the mutated one. However, these girls will be carriers, and each son of a carrier mother has a 50 per cent chance of inheriting the gene and developing the disease. This is because boys only receive one X chromosome and, if that has the mutated gene, they will one day develop the symptoms of Kennedy’s disease.

It is estimated that 1 in 40,000 people have this genetic defect and because it is relatively rare, Kennedy’s Disease is often initially misdiagnosed or goes undiagnosed for years. There is no cure for Kennedy’s disease and no current treatment available.

However, US studies in the last 12 months think this could 1 in 6,500 as the majority go undiagnosed.