We are the only UK based charity for Kennedy’s Disease (KD); a non-profit organisation run by volunteers and sufferers. We realise that more is needed to help raise the awareness of this awful disease and we want to make sure that people out there hear about Kennedy’s Disease and the effect it has on sufferers, carers, family and friends. There is only one centre carrying out vital research in the UK and we hope that our efforts will help them to find a cure for the disease.
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.
Although the disorder predominantly affects males, it can only be passed on through female carriers of the gene. As the mutation is on the X chromosome, the disease affects males as they have only one X chromosome. For female carriers, it is possible that their sons may get the disease, and their daughters may become carriers. Sons of affected males do not get the disease since the male does not pass on his X chromosome.
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.
"I can’t thank Kennedy’s Disease UK enough. There is currently no cure or treatment for this rare disease, and patients are struggling without the care and support they need. KD-UK’s tireless work to raise funds for UCL’s research into our understanding of this disease and the development of potential treatments, and their efforts to raise awareness of the disease and help others to access critical information, is invaluable. With KD-UK’s help, UCL research is making important progress and we are incredibly grateful for their support."− Professor Linda Greensmith, Research Lead at UCL