Golf Captain’s £13,000 Fundraising for Cure Usher Syndrome Charity

Despite the weekend’s snowy conditions, Badgemore Golf Club’s AGM went ahead on Saturday and saw out going Men’s Club Captain, Melvyn Keen, present a cheque for £12,853.82 to Charlotte Dingley, who was representing the charity Cure Usher Syndrome.

Every year, the club captain chooses a charity to fundraise for during their time in the post and Melvyn explained that he wanted to choose a charity that was smaller and less well known than some and something close to his heart. “A close friend’s daughter has not one but two children with Ushers Syndrome, and when I heard about the amazing work the charity is doing to raise awareness, support families and fund research, my decision was made. My aim to was to raise around £10,000 so to have raised just short of £13,000 is really fantastic and I am delighted to be able to hand over such an amount to a charity that it will mean so much to.”

The year started with the traditional ‘Drive in’ where, after golf, there is lunch and an auction. Local restaurants, pubs and other businesses donated auction lots and Charlotte Dingley – the afore mentioned daughter of a family friend, was drafted in to speak at late notice after illness struck down the intended representative from the charity. She captivated the audience with her heart-rendering account of living with two children that both have the syndrome. Most likely spurred on by Charlotte’s words, the auction raised a staggering £4000, getting the fundraising off to a flying start.

Other events were held throughout the year, including a sponsored 72 holes in a day (played by both the men’s and ladies captains – Melvyn and Sandy Johnson), a 1920’s themed Hickory Golf, Captain’s Day and an Open Weekend where non-members come and compete in a competition with any profits raised going to the charity. This was clearly a charity that got right to the hearts of members though as, throughout the year, donations were also just handed over, whether there was an event on or not.

Charlotte was asked to come and receive the cheque and had no idea how much had been raised. “It was a great surprise to have been the charity selected by Melvyn in the first place as there are so many deserving charities out there, but when he showed me the cheque was for so much we were absolutely delighted! The money will be put to very good use – the charity is small but growing.”

Ushers syndrome is an inherited condition that involves both hearing loss and visual loss caused by Retinitis Pigmentosah. Currently there is no cure or treatment for the condition and so the charity, set up by suffer Jo Milne and Steve White, are directly funding research which is being carried out by Professor Mariya Moosajee of Moorfield Eye Hospital and UCL. They are also aiming to raise awareness of the condition as well as an understanding of the challenges faced, but also the abilities of, those living with the condition.

Charlotte’s sons were both born deaf but otherwise live a normal life, enjoying life at school and preschool – just with hearing aids. Two years ago, both boys were diagnosed with the condition, which now means the family are having to get used to the idea that the boys will also progressively lose their sight. Charlotte explained “The sight loss could begin to happen any time from the age of 7 up until they are in their teens, which makes it all the more difficult to deal with as it is a waiting game. The not knowing is really tricky. At the moment we focus on creating as many visual memories as we can, so that when their sight is gone, they have memories to give them reference.”

“Melvyn has been such a driving force raising this money and we are so grateful. It’s been really hard to deal with the news about the boys and Melvyn’s work has really given us a lift in a time of stress. The research the charity is funding gives us a little bit of hope for the future.” Charlotte’s son also wrote a Thank you letter that was read out at the ceremony, bringing a tear to many an eye.

To find out more about Ushers Syndrome please use the link below.

Cure Usher Syndrome