GEM Appeal

Intro

A research facility, set up with money raised by Rochdale mum Karen Sunderland-Hoather, via the GEM Appeal, has developed a lifesaving treatment for genetic disorders. The treatment, originally discovered by American doctors, was developed by specialists at the Simon & Michael Hoather Metabolic Unit in Manchester. Sadly it has come too late to save Karen's sons.

The treatment, which is an enzyme replacement therapy, should be available for children with a similar condition known as Hurler Syndrome in November and available to treat Hunter Syndrome in the Autumn of next year. The treatment will consist of the children going to the hospital once every four weeks to be placed on a drip to receive the enzyme they lack. Karen adds:

"This treatment will stop genetic disorders developing in the young and will allow these children to lead more or less normal lives. It is wonderful news because I now know other children will not suffer and die like Simon & Michael. This is a dream come true and I did not think it would happen for an awfully long time."

Despite this amazing breakthrough there is nowhere for the treatment to be carried out and the GEM Appeal is now trying to raise £70,000 to build a four bed portable building next to the unit. The treatment centre would be the only one in the North of England and 10 children would be helped immediately, with more being treated if the building was financed.

"The only way to halt these cruel devastating life terminating illnesses in children is to fund the research and one day find a cure to these genetic disorders, so that no children die the way Simon has, and Mike will."
Denise Welch, Patron GEM Appeal, Granada TV "Coronation Street"
"Please help us stop this happening to children in the future, my boys will die, but others may not if we can find a cure"
Karen Sunderland-Hoather, mother of Simon and Mike
Simon and Mike are brothers who suffered from a mucopolysaccharide disorder called "Hunter Syndrome" - one of 8 similar disorders. There will very shortly be treatment for these disorders which cause mental and physical handicap and early death in the majority of cases. The children lack an enzyme which does a vital job of breaking down waste products within the body causing enormous problems to the sufferer such as deafness, heart disease, stunted growth, lung problems, lowered immunity and brain damage. Sadly, Simon and Michael have now passed away.

The GEM Appeal - History
In recent years huge advances have been made in the understanding and treatment of Genetic and Metabolic Disorders. It was recognised that the work being carried out at the WILLINK BIOCHEMICAL GENETICS UNIT at the Royal Manchester Children's Hospital was advancing at such a fast rate that it became apparent that the unit was struggling to cope with the demands put upon it, and the need to extend the Unit was urgent.

The GEM Appeal (Genetics, Enzymes, Metabolism) was launched in September 1994 with an initial charitable donation of £70,000 and an aim to raise £500,000 to fund the building of the extension to house further laboratory and office space which will enable the research and treatment of rare life threatening genetic and metabolic disorders in children to continue and develop further. The Trustees of the GEM Appeal were found from varying walks of life, mainly parents of children suffering from genetic disorders and health professionals working in the field of genetics and the fund raising began in earnest!

The Appeal has gained momentum with numerous fund raising activities varying from karaoke nights, sponsored events, garden parties to the now annual Summer Ball in Rochdale, raising varying totals from a few pounds to £6,000 at one single event.

A group of like-minded people in Rochdale joined forces in 1996 and formed a fund raising group and try to hold events monthly to raise cash for this vital cause. Along with people in other areas of the North West such as Salford, Bolton, Wigan and Preston, the total is steadily rising getting us closer all the time to our target. It is vital that research continues and the only way to achieve this is by charitable donations.

The future of treatment into Genetic and Metabolic disorders in children depends totally on the research done NOW and is vital for the future treatment and cure of these life threatening disorders which so cruelly devastate so many lives.

Over 2,000 children currently attend the Willink Unit and require the very specialised care and attention from staff working there. The demands are growing fast and after 5 years of dedicated fund raising the building started in January 1999, and was completed in the Summer of 2001.

Please help us to raise the vital funds into this area of medicine to fund the vital work which will now be carried out in the GEM Appeal Extension.

Contact Information

GEM Appeal

GEM Appeal Office
12 Lancaster Terrace
Norden
Rochdale
OL11 5TU

Tel: 01706 715920