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Wolfram Syndrome UK

Team photo with a couple of great friends from Aston Lark and Wingate Benefit Solutions raising money and awareness for Wolfram Syndrome UK (DIDMOAD) at Mannings Heath Golf & Wine Estate a few weeks back.

Lots of fun on the golf course and a top day all round. Great see the very talented and inspirational Jennifer’s artwork being auctioned after the golf. Great day out!

For those who do not know, Wolfram Syndrome is a rare, progressive neurodegenerative condition, which is life shortening. Wolfram Syndrome UK (WSUK) is the only national charity and support group to help fund research and provide support to those affected by the condition as well as their families in the UK.

The support group and website were started in 2010 by Paul & Tracy Lynch from Worthing, West Sussex after their daughter, then aged eight, was diagnosed with WS. The only website associated with WS then was a worldwide site. There was no easy to read information available and no real support, as many medical professionals had or still have never heard or come across the syndrome.

WSUK became a registered charity in June 2013. Prior to that they had been raising funds for research via WellChild, the national charity for sick children, and our fundraising group ‘The Charity Roadtrip’.