2023 was a devastating year for us, discovering I have Kennedys Disease and then to find out Jen had Breast cancer was difficult.

However during the year we have both met and been helped by some amazing people.

So in 2024 I want to give something back and raise sponsorship to support KD UK, St Richards Hospice and the Worcestershire Breast Care Haven by jumping out of a plane.

KD UK St Richards Hospice Worcestershire Breast Unit

Many, many years ago I said I would like to experience a Sky Dive and was told nobody in their right mind jumps out of a fully functioning plane.

Last year we visited the Red Devils Team at Netheravon, providing I can hold my own legs up, there is a Devil prepared to Tandem jump with me, weather permitting was going to be Friday 26th April, but due to low cloud and rain has been moved to Thursday May 9th 2024.

Please help me raise money for these life changing charities.

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.