Charity Hopes to Raise Thousands with Butterfly Ball
News release
18th September 2013
The Ally Cadence Trust, a children’s charity based in Lincolnshire, is hosting an event this month to raise money and awareness of Spinal Muscular Atrophy.
On 28th September the Butterfly Ball will be held at the Petwood Hotel in Woodhall Spa. It’s an annual event organised by Emma and Karl Humphries who founded the Ally Cadence Trust in memory of their daughter.
The Butterfly Ball is set to be a fun-filled evening, with live acoustic music provided by James McLean, an auction hosted by Luke Marsden, a four-course meal, drinks and a disco.
Luke is best known for his appearance on Big Brother and his popular radio show on Rock FM.
For Emma and Karl, who live in Walcott near Sleaford in Lincolnshire, it’s a significant event as it comes two weeks after what would have been their daughter Ally’s fifth birthday. Ally died of Spinal Muscular Atrophy aged just six months in 2009.
SMA is a rare disease that affects approximately 1 in 6,500 children and often proves fatal at a young age. The average life expectancy of a baby with SMA is just two years.
Because they found it hard to access support during Ally’s illness, Emma and Karl set up the charity in 2009 to support and advise families who have been affected by the disease and to find specialist equipment. They’re hoping that this event will allow the Ally Cadence Trust to aid more people in need of help.
Emma said: “In the past few months, demand for our services has increased massively – we are very busy and it’s fantastic to be able to help so many families. However, our funding is now depleting and we desperately need to secure more money to be able to help more people.”
The charity hopes to raise £30,000 by the end of the year and ticket sales and the auction at the Butterfly Ball are expected to make a significant contribution to the total. With volunteers and contributions from businesses helping towards the event, Emma and Karl are hoping to secure the last few auction items in the next week to ensure the night is a success.
If you or your company would like to donate an item to the Butterfly Ball auction, or you want to know more about the charity or event, please call Emma on 0800 23 43 762 or email emma@actsma.co.uk.
Ends
Notes to editors:
About the Ally Cadence Trust for Spinal Muscular Atrophy
• The trust was set up in March 2009 by Karl and Emma Humphries in memory of their daughter Ally Cadence. It became a registered charity in December 2009
• Since launching it has raised more than £50,000 to help people affected by the disease get access to specialist equipment
• Visit www.actsma.co.uk for more information about the charity and www.allycadence.co.uk to read Ally’s story
• Spinal Muscular Atrophy is a genetic disorder that affects nerve cells so that muscles can't be used and become wasted, or atrophied. The nerve cells become damaged, breaking the link between the brain and the muscles. As a result, the muscles can't be used and waste away. This can lead to problems with breathing as well motor activities such as crawling, walking, feeding and head control.
Cesca Bickley
Shooting Star PR
01522 528540
cesca@shootingstar-pr.co.uk
www.shootingstar-pr.co.uk
t: @cescabick
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