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Royal Manchester Children's Hospital Genetics Trust  (The Gem Appeal charity)  raises money for children with rare genetic diseases. www.gemappeal.org.uk.

Karen  Johnson, a Rochdale mum,  started the charity in 1994 in a race against time, when her 2 sons, Simon and Mikey, were diagnosed with Hunter Syndrome, a rare genetic disorder.   After deteriorating both mentally and physically, her 2 sons, Simon and Mikey, lost their fights for life.

Fundraising continued and money raised built a Research and Treatment Unit at Pendlebury Children’s Hospital  and the laboratory was named after them.  The Unit has now moved to Royal Manchester Children's Hospital  and  over £3.5 million has been raised by The Gem Appeal so far. The purchase of  medical equipment has been a vital part of pioneering research, to develop treatments for many rare genetic conditions, reducing symptoms, prevent further complications and giving better quality of life. Our quest to find cures is ongoing. Karen was presented with a Pride of Britain Award in 2016 and the charity has received The Queen's Award for Voluntary Service.   None of our committee are paid, we have no premises and just love what we do- just wish we didn't have to do it.

Money raised by our supporters has  recently bought a Tecan machine for Royal Manchester Children's Hospital. This significant piece of equipment, which costs £120,000 is now up and running. The equipment we have bought is helping pioneering research, developing enzyme replacement therapies, or performing routine, but essential jobs, enabling the Specialist medical teams to concentrate on more complex tasks. The Senior Bio-Scientist at the Willink Unit, which was built by money raised by The Gem Appeal, has told us that it is an exciting time for developments in genetics. We have been part of this journey and we want to continue to be with them every step of the way.  

 Karen Johnson, Chairman of The Gem Appeal, gave a heart rending speech at one of our events, informing everyone how significant their support and donations are, because now, because of research at The Willink Unit, Manchester Children’s Hospital, a diagnosis of a rare genetic disease, such as Hunter Syndrome, which is the condition which Karen's boys, Simon and Mikey suffered with, does not mean a death sentence, as it did for them.

Treatments have been life-changing for many families with children with genetic conditions; reducing symptoms, avoiding further complications, extending life expectancy and giving better quality of life. 

If only Simon and Mikey were still here now.