Kennedy's Disease UK

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Who we are.

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.

Latest news.


My husband is disabled. One day I stood up and made MPs listen to our story…

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This is the excellent article written by Katy Styles and published in The Guardian newspaper highlighting the struggles sufferers and their carers endure at the hands of this disease. Please...

Moonlight Lantern Walk
21 May 2016

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On 21st May 2016 Sarah Hawkins organised a fund raising event, The Moonlight Lantern Walk. The walk started in Padstow and finished in Hawker’s Cover which is a distance of...

KD-UK awards its largest ever Research Grant to UCL

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Kennedy’s Disease UK (KD-UK) is a local charity making a big difference. It recently awarded an £80,000 research grant to University College London which hosts one of the leading research...

UCL testimonial.

"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

Our supporters.