Claire Edge

Great North Run Sunday, 19th September 2010 In support of the Gorlin Syndrome Group Registered Charity No 1096361

This year I am participating in the Great North Run and raising funds for the Gorlin Syndrome Group. This annual event is the world's biggest half marathon from Newcastle to South Shields.

My late uncle, Jim Costello inherited Gorlin Syndrome, a rare genetic condition, and on diagnosis Jim founded the Gorlin Syndrome Group offering advice, information and guidance to patients and their families affected by the condition.

The main characteristics are multiple jaw cysts (keratocysts) and recurrent basal cell carcinomas (skin cancer) which require regular monitoring and treatment. Other symptoms occur but most are rare but these can include ovarian and cardiac fibromas, ophthalmic problems, cleft lip and palate, medulloblastoma (type of brain tumour). Three of Jim's four children also inherited the condition, his youngest daughter Anna died at the age of ... more

Great North Run Sunday, 19th September 2010 In support of the Gorlin Syndrome Group Registered Charity No 1096361

This year I am participating in the Great North Run and raising funds for the Gorlin Syndrome Group. This annual event is the world's biggest half marathon from Newcastle to South Shields.

My late uncle, Jim Costello inherited Gorlin Syndrome, a rare genetic condition, and on diagnosis Jim founded the Gorlin Syndrome Group offering advice, information and guidance to patients and their families affected by the condition.

The main characteristics are multiple jaw cysts (keratocysts) and recurrent basal cell carcinomas (skin cancer) which require regular monitoring and treatment. Other symptoms occur but most are rare but these can include ovarian and cardiac fibromas, ophthalmic problems, cleft lip and palate, medulloblastoma (type of brain tumour). Three of Jim's four children also inherited the condition, his youngest daughter Anna died at the age of 6 months as a result of cardiac fibromas. His elder daughters Jane and Helen continue with surveillance and treatments to ensure effective management of the condition.

Since Jim's death in 2002 aged 51 years, Margaret his wife has continued to run the group with the support of 5 other committee members and the backing of a full medical advisory board. I have decided to support the Gorlin Syndrome Group as I know the impact of the condition has had on the Costello family. Despite the unconceivable difficulties and pain he suffered, Jim inspired many in his ability to make the most of his life circumstances. Jim rarely spoke of his condition, always wanting to hear of others, listening, consoling and lifting our spirits, along with his natural warmth and sincerity Jim had an incredible sense of humour and a wonderful presence of being. He worked tirelessly to raise awareness of this rare disorder and offer much needed support to other affected by Gorlin Syndrome.

As a small voluntary organisation the Gorlin Syndrome Group are totally reliant on donations and fund raising events of this nature and for this reason I would value your support.

Thank you. Claire Edge If you would like to know more about Gorlin Syndrome (also known as Nevoid Basal Cell Carcinoma Syndrome) visit www.gorlingroup.org