Gauchers News Contents
On Saturday 10 November 2001 at the Association's 10th Anniversary Celebratory Dinner, Gloria Gordon, widow of the late Alan Gordon, presented Tanya Collin-Histed with the 3rd Alan Gordon Memorial Award in recognition of her outstanding work in helping families with neuronopathic Gauchers disease.
Gloria Gordon, when presenting the third Alan Gordon Memorial Award to Tanya Collin-Histed, said: 'The recipient of this year's Award is an individual who has contributed a great deal to Gauchers patients.
'Despite having to care for a child with Type 3 Gauchers disease, having a second child and holding down a demanding job, the recipient of this Award has committed much time and energy in helping families with neuro-nopathic Gauchers disease.
'She has worked with the Association since 1997 and tirelessly striven to help families both in the UK and overseas. She has gained a tremendous understanding of this rare form of the disease which affects the central nervous system and has been able to share this with other families.'
Tanya replied: ''Not only do I feel privileged to receive this Award but I feel privileged because I have found my passion. Working for the Gauchers. Association has given me a real purpose in life. Some people search their whole lives and never find it. I have and I have many people to thank for that.
'When I was asked 4½ years ago to join the Executive Committee to represent Type 3 families, I had my reservations. I was just a mother and still struggling to come to terms with what life had dealt me.
'But I thought back to when Maddie had been diagnosed and remembered how alone I had felt and I thought if I could just help another family and let them know that they were not alone then it would be worth it.
'This was borne out when we travelled with Maddie to Nottingham to meet a family whose daughter had just been diagnosed. When they met Maddie and saw how normal she was and she was able to do lots of things, I could see that the family saw hope.
'Taking on this role has been a challenge but one I have thrived on and which I feel lucky to carry out.
'It hasn't always been fun. I have shed many a tear when I have had to talk with families who have lost children or who have had bad news. I too am just a mother and have had no training and although Maddie has neuronopathic Gauchers disease she is doing well and I sometimes find it difficult to find the right words. '
'In the years since I took on this role, together with Dr Ashok Vellodi and the other families, many positive things have been achieved:
The first ever Family Conference for neuronopathic Gauchers disease took place two years ago in Northampton thanks to the support of the Gauchers Association and the Helen Manuel Foundation.
The production of two information booklets on Special Educational Needs and Information for Families.
The development of the European Consensus on the Management of neuronopathic Gauchers disease and its publication in July in the Journal of Inherited Metabolic Diseases.
The introduction of dedicated pages in the Gauchers News for neuronopathic Gauchers disease.
The establishment of a Fund specifically for neuronopathic Gauchers disease.
And finally a communication and support network for families.
'All over the world doctors, scientists, parents and others are working hard to raise the profile of neuronopathic Gauchers disease, to find a cure and provide support and advice to new and existing families.
'I feel honoured to be part of this and would like to thank Susan and Jeremy for their support and kindness and giving me the opportunity to carry out this role. I would also like to thank the families in the UK and elsewhere for their friendship and support and give a huge thanks to Dr Vellodi, without his advice, input and drive I would not be receiving this Award. He has been a true professional, a real friend and his kindness has been limitless.
'Finally I would like to thank my husband Mark who came into my life after Maddie had been diagnosed. He has been my rock, always there for me especially when times have been hard. He has been patient and given me time out to carry out this role.
The Alan Gordon Memorial Fund was established to commemorate Alan Gordon, the Association's first Treasurer, after his death in December 1995
Alan Gordon was a chartered accountant and the Association's first treasurer. With his wife Gloria, they were involved since its foundation and hisi influence, wisdom, great charm and humour shaped its early days.
Sadly in addition to Gaucher Disease, Alan had the added complication of myloma (bone cancer) which ultimately overcame him.
He was a man of courage and modesty and the Alan Gordon Memorial Award was established by Gloria, his family and friends to perpetrate his memory by offering an Award to an individual or group of individuals who, in the opinion of the Award Committee, has made a significant contribution to Gauchers disease, its treatment or management; or has made a significant commitment to the treatment of Gauchers disease or Gauchers patients or their families, or is particularly worthy of recognition of this Award.
The first Award was given in 1966 to Dr Pram Mistry for his work at the Royal Free Hospital; he is now at Yale University in the USA. The second Award was presented to Dr Fran Platt and Dr Terry Butters of the Oxford Institute of Glycobiology.
Gauchers News Contents
Source: Gauchers News March 2002.
© Copyright Gauchers Association 2002