A NEW national charity aimed at tackling a rare neuromuscular disorder has been launched by a Dorset woman.

When Kate Hopps, 43 of Martinstown, found out her husband of 21 years Frank had Kennedy’s Disease, her world was turned upside down.

Kennedy's Disease (KD) is described as an inherited motor neuron disease that affects men. There is no cure for the disease and no current treatment.

Kate said: “It's very scary when you're told that your husband has this disease because so few people know about it.

“I wanted to reach out and learn from other sufferers but there was very little information out there.

“Kennedy's disease is awful; it’s a degenerative muscle disease that can lead to severe mobility issues which can become life threatening.

“Bit by bit, it strips men in their prime of their strength which then eats away at their confidence and esteem.”

As parents to two daughters, Kate and Frank knew that they had to do something to fight back against the disease.

They found out that research was taking place into the disease at University College London but no formal charity structure was in place to support it.

Kate then began the journey to launch national charity KD-UK, based in Dorchester, aimed at raising awareness of the disease and generating funds that can be used to fight it.

Kate added: “The progressive nature of KD means many sufferers will end up in a wheelchair and unable to live unassisted.

“One of the particularly cruel things about this disease is that the defective chromosome that causes it is passed from women to their sons - but although they are carriers women do not typically develop the disease.”

It is estimated that just one in 40,000 people have the KD genetic defect and, because of its relative rarity, many sufferers go undiagnosed for years.

A total of £20,000 has already been given to the research team at UCL but further funds are needed as this year’s patient study costs £36,000 and annual research costs are more than £100,000.

Friends have rallied round to help Kate raise funds.

Fundraising efforts have included a cycling challenge through the Alps, the Trans Rockies Run in Canada this summer and the offer of a stay in a Majorcan apartment for a week.

Kate, together with a team of eight children, three mums and two other adults, also ran the 10k course of the Dorchester Lions Fun Run recently to raise funds and awareness for the new charity.

Kate said: “It's a challenge to start a national charity from scratch but that's nothing compared to the daily struggle of Kennedy's sufferers and their families.

“If you want to see courage and be inspired on a daily basis, you just need to spend time with them.

“Since we started the charity I've been overwhelmed by the support I've received.”

For more information on KD-UK visit kennedysdiseaseuk.com.

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