GAUCHERS NEWS MARCH 2002


Gauchers News March 2002

Future Developments for Gauchers Disease including Enzyme Replacement Therapy
Prof Timothy Cox who heads the Gauchers Centre at Addenbrooke's Hospital, Cambridge, spoke about the history and future developments of Gauchers disease including the use of enzyme replacement therapy.(March 2002).

Monitoring and Testing Gauchers Disease
Dr Atul Mehta runs the Gauchers Centre at the Royal Free Hospital in London together with Specialist Nurse Linda Richfield. Dr Mehta explained the need for the regular monitoring and testing of patients.(March 2002).

Pain Management and Ozone Treatment
Prof Ari Zimran spoke about pain management and ozone treatment at the 5th Conference. He said that the next generation of people with Gauchers disease will hopefully not have to suffer pain from the disease. (March 2002).

HOW THINGS WERE: Melanie's Story A Splenectomy Three Months After My Son's Birth
Melanie, now aged 44, told her story of pain and hope over the past 30 years at the Association's Conference on 11 November 2001. Her brave story should be compared with how she would have been diagnosed and treated if she had been born 25 years later, as in Emily's case which is described in the next story. (March 2002).

HOW THINGS ARE: Emily's Story
Growing up with Gauchers Disease

Emily was diagnosed when she was 13 years old but fortunately started Cerezyme soon after. She is now a beautiful young woman aged 18. Her story is an example of how enzyme replacement therapy has enabled her to fulfil her potential and contrasts with Melanie's story above. (March 2002).

Children with Gauchers Disease
Dr Ashok Vellodi,who runs the paediatric Gauchers Centre at Great Ormond Hospital for Children and is pictured below, spoke about children with Gauchers disease at the 5th Conference. He said that his Centre and that of Dr Ed Wraith at the Royal Manchester Children's Hospital worked closely together and within common guidelines. (March 2002).

Bone Complications and Launch of Research Project
Prof Timothy Cox began his talk at the 5th Conference by describing the distressing symptoms of bone complications and then described the exciting Collaborative Bone Research Project to be undertaken by the four UK Gauchers Centres. (March 2002).

Progress of OGT 918 Substrate Balance Therapy
Prof Ari Zimran has observed 500 patients at the Gauchers Clinic in Jerusalem, Israel and spoke at the 5th Conference in November 2002 about the changing pattern in the symptoms of Gauchers disease and the new substrate balance therapy (OGT 918) which is currently on trial. (March 2002).

Don Tendell Appointments
Don Tendell will sit on the Committee of the UK Forum of Genetics and Insurance and the Human Genetics Commission Consultative Panel (March 2002).

Third Alan Gordon Memorial Award
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. (March 2002).

Celebration to Share the Successes of the Last Ten Years
The Gauchers Association celebrated its 10th Anniversary on 10 November 2001 with over 115 guests at a special Dinner held at the Wembley Plaza Hotel on the outskirts of London the day before the Association's 5th Conference.(March 2002).


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