A national charity, which helps children and their families affected by a devastating genetic condition, is facing financial crisis after being hit hard by the economic downturn.
The Jennifer Trust for Spinal Muscular Atrophy (SMA) has seen its income plummet by 30 per cent over the past three months. The charity provides care and support for families affected by SMA and funds research into the disease, which affects around 100 babies in the UK each year.
Richard Green, Chief Executive of the charity, says the drop in income has hit them hard and they now face making redundancies.
“Since the credit crunch struck we have seen a massive downturn in our monthly income,” said Richard. “Because we are a small charity it has had a devastating effect on us in a very short space of time. We are now forced to be looking at redundancies, which is something we are all shocked by. “
The charity raised £800,000 to fund its services last year but has been failing to meet its monthly income target since before Christmas, when the credit crunch began to take a firm hold of the country.
It is now hoping that an urgent appeal for donations will give it the reprieve it needs in order to avoid cutting its actual services as well. “If we don’t get income back on the rise again quickly we cannot guarantee that our services won’t be affected,” continued Richard. “That would be catastrophic for the families we help.
“We are the only national charity providing much-needed support to families affected by SMA, whether that’s helping parents to cope with the loss of their baby or with the effects of having a severely disabled child in the family. Families affected by SMA have often had no experience of the disease in the past and desperately need somewhere to turn to when they receive a diagnosis. We are the people they turn to,” he added.
Donations to the Jennifer Trust can be made online at www.jtsma.org.uk or by telephoning 01789 267520.
SMA Facts
SMA is a condition that affects certain nerves in the spinal cord, breaking the link between the brain and the muscles. As a result, the muscles cannot be used and become wasted or atrophied.
Children with what is known as Type I SMA never sit and rarely survive beyond two years of age.
Type I SMA is the biggest genetic killer of infants in the UK.
Type II children can sit, but cannot walk. Many Type II children can live into adulthood but need a lot of support.
Type III SMA causes problems with walking or getting up from sitting but is not a life limiting condition.
About 1 in 40 people in the UK are carriers of the defective SMA gene (over 1 million people). Both parents need to be carriers before a baby is at risk. In these circumstances, there is a one in four chance of the baby being affected.
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