An island charity which supports familes affected by a rare neurological disorder is celebrating after raising £100,000 in its first 18 months.

The Manx MSA Trust was founded in February 2016 by Chris Blake, a father of two who was diagnosed with Multiple System Atrophy, at the age of just 39 in March 2015.

All the money raised by the charity go straight to the charity’s aims: providing a hub for island patients and families; raising awareness of the condition, particularly among the medical profession in the Isle of Man; and supporting research to find an early diagnosis, through a simple blood test.

The Manx MSA Trust has raised the funds through a range of fundraising events.

The first fundraiser was a poker tournament which saw 60 players and 40 guests join in a battle for prizes. This event alone raised £6,000.

Other events included a summer ball, and supporters taking part in events such as the Parish Walk.

Niall Carey, head of communications for the charity said: ’We are delighted that we have managed to raise such a huge amount in such a short space of time.

’We are eternally grateful to all our supporters, in particular, PokerStars Helping Hands, Lloyds Bank, Barclays Bank and the many, many other supporters who give their time and donations to support us. ’

Niall explained that some of the money raised had already been put to good use.

’We have now used some of these funds to support a 12 month research project to find an earlier diagnosis, through a blood test,’ he said.

’Together with Courtney Heading at Jurby Wellness, we have put together a team of experts, including University College London, Protein Technologies, CynapseDX & Liverpool Biobank for this research and we hope to have some preliminary results in the next few months.’

Chris’s own diagnosis took some five years to confirm and was primarily symptom-based. The charity say that in part, this was because MSA is such a rare disorder and not very well-known, particularly in the island.

Chris said it had been a difficult process to adjust to life with his condition but he feels blessed to have had the support of many people.

He’s had to retire through ill-health, which he described as a ’bitter pill to swallow’.

’It’s a case of repositioning my objectives and my goals are more aligned to making memories with my young family.’

He’s volunteered to help researchers to help better understand the condition.

MSA is caused by degeneration or atrophy of nerve cells in several areas of the brain, which can result in problems with movement, balance and autonomic functions of the body such as bladder and blood pressure control.

For more information about the charity visit www.manxmsa.com