A Lincolnshire charity has become the pick of the crop after Boston food producer Freshtime UK chose it as its Charity of the Year for 2014.
The Ally Cadence Trust for Spinal Muscular Atrophy (ACT for SMA) was set up by Emma and Karl Humphries in 2009 after they lost their youngest daughter Ally Cadence to the condition aged just six months.
The couple offer support, advice and equipment to families across the UK who are affected by Spinal Muscular Atrophy Type 1.
Throughout 2014 Freshtime UK staff will raise money for the Ally Cadence Trust and stage fund-raising events to support the charity.
â€œAs a business we think itâ€™s important to give something back to the local community and one of the ways we will do this from now on is by adopting a different charity every year,â€ said Freshtimeâ€™s Managing Director Mark Newton.
â€œWe were very moved by Karl and Emmaâ€™s story and weâ€™re pleased to be able to give our support to their very worthwhile charity throughout 2014.â€
Emma Humphries, of Walcott near Sleaford, said: â€œSMA is a very rare condition and something which a lot of people are still unaware of. But for the families affected each year it can be devastating, and itâ€™s difficult to know where to turn for help.
â€œThis illness is currently incurable and children with the condition have an average life expectancy of just eight months.
â€œWe wrote to Freshtime asking if they would sponsor our annual Butterfly Ball in September so it was a complete surprise when Mark wrote back to us and said his company would be supporting us for the whole year!
â€œFreshtimeâ€™s help will make a massive difference to us as weâ€™re a very small charity and every penny we receive goes to help parents of children who are affected by Type 1 SMA.â€
Spinal Muscular Atrophy is a genetic disorder that affects nerve cells so that muscles can’t be used and become wasted, or atrophied. The condition is very rare â€“ around 100 cases a year â€“ and can require expensive equipment to make life more comfortable for a poorly child. As such it can be hard for families to access support or pay for equipment such as wheelchairs and specially adapted car seats.
Babies with Spinal Muscular Atrophy (SMA) Type 1 are unable to roll over and crawl and will never stand or walk. There is significant muscle weakness and respiratory distress, which over time leads to the permanent use of oxygen.
For more information about Ally Cadence Trust for Spinal Muscular Atrophy, please visit www.actsma.co.uk