Charity Golf Days
Over the years we have ran and volunteered at many charity golf days. This season we are supporting
GOLF DAYS IN AID OF GOSH and GOLF DAYS IN AID OF OCCIPITAL HORN SYNDROME SUPPORT UK.
GOLF DAYS IN AID OF GOSH and GOLF DAYS IN AID OF OCCIPITAL HORN SYNDROME SUPPORT UK.
GOLF DAYS IN AID OF GOSHThe world famous Great Ormond Street Children's Hospital is a place that our family know really well. My son David Jnr., during the first eighteen years of his life, spent a great deal of time there as a patient. One of his "claims to fame" as a youngster was "I've had more operations than birthdays!" (a couple of which were life saving!)
At 13 months old he was diagnosed with a rare condition called Ehlers Danlos Syndrome by the doctors at GOSH. The care and after care provided by GOSH during those eighteen years was first class in every aspect, for which we are all extremely grateful. Once in his early twenties David became a volunteer fund raiser for GOSH, was elected onto a committee of ex-patients, represented ex-patients at full board level committee meetings which culminated in him being asked to become an Ambassador for GOSH. This involves speaking on behalf of GOSH at anything from a local Women's Institute meeting to a black tie fundraising ball at Wentworth Golf Club in front of hundreds of people! David does all of these things on an unpaid, voluntary basis in gratitude for the care and attention shown to him by the staff of GOSH during his first eighteen years. Great Ormond Street Children's Hospital was founded in 1852 and sees thousands of patients on a yearly basis. It relies heavily on charitable donations to maintain its position as the world's leading children's hospital. Money raised could be spent on anything from a state of the art piece of life saving medical equipment to improving accommodation areas for parents staying overnight. Attending one of our fundraising Pro Ams will not only be a fun day on the golf course for you, it will raise much needed funds to improve children's (and their parents) stay at Great Ormond Street Hospital! If anyone is happy donate a prize that will be raffled or auctioned at one of our charity golf days please contact me via email. |
GOLF DAYS IN AID OF OCCIPITAL HORN SYNDROME SUPPORT UKDavid Jnr. has, after some intensive genetic testing at both Addenbrookes Hospital (Cambridge) and University College Hospital (London), has been re-diagnosed as having
OCCIPITAL HORN SYNDROME (OHS). This is an extremely rare condition, with less than twenty people worldwide having been diagnosed with the condition. Occipital Horn Syndrome was until fairly recently considered to be variant of Ehlers Danlos Syndrome (EDS) It is caused by a mutation in the adenosinetriphosphatare alpha polypeptide (ATP7A) gene. It results in a deficiency in the transport of the essential mineral copper through the body’s connective tissues. It is characterised by: . Wedge shaped calcium deposits in the occipital bone at the base of the skull . Hyperelastic skin . Recurring hernias . Bladder diverticula . Hyperextensible joints . Multiple skeletal abnormalities . Limited elbow & knee extension . Osteoporosis . Narrow chest and shoulders . Chronic pain through all the body’s joints OHS SUPPORT UK will offer advice and financial support to UK based sufferers who will need to visit the world’s leading authority on OHS – Dr. Stephen Kaler who is based at The Walter Reed National Military Medical, Bethseda, Washington. Your generosity by playing in our fundraising pro am’s and sponsoring me in my 26.5 mile River Blackwater Sea Wall Marathon (from Salcott to Maldon) will subsidise the cost of the essential medical research appointments. |