Sara Hunt of ALD Life talks to Denise Beedell in the fourth in a series of articles featuring the winners from the FSB Celebrating Small Business London Area Finals held on 19 March.
When Sara’s son was diagnosed with adrenoleukodystrophy (ALD) in 2001 she could not have known that 17 years later she’d be picking up an award as CEO of a business set up to offer practical, emotional and financial support for families affected by ALD.
ALD is a rare, terminal genetic brain disorder affecting apparently normal healthy males aged 4 to 60, causing complete loss of function and death usually within a year of diagnosis.
ALD Life is a registered charity whose core supporters are mainly people affected by the condition themselves. Sara started fundraising through jumble sales and realised there was a better way to help by setting up a charity shop.
A week after opening her first shop, her eldest son broke his leg and with his condition, this meant he was unable to attend school for three years and had to be home tutored.
The opening of the second shop came at the start of her youngest son requiring a bone marrow transplant.
It was third time lucky when the next shop opened without any drama, but as the fourth shop was preparing to open, her eldest son unexpectedly died and her staff had to take over.
Up until then she had been a volunteer, but it was at this point that she applied to the trustees to become the CEO and fortunately they, and the Charity Commission agreed.
Sara’s story is the ultimate story of triumph over adversity and she now has five shops across London.
Sara says, “Our key focus is to get ALD testing on to the new born screening list. My youngest son was monitored and able to have a bone marrow transplant before he was affected and is now living a normal life. We want to give that chance to others before it’s too late to help.”
“Although I came to running my own business through the worst possible circumstances, it has turned out to be the best job ever.
“I have a dedicated, supportive and passionate team of 20 staff who I wouldn’t swap for the world.”
In the future Sara hopes to expand the range of charitable activities undertaken and she is also working to change ALD’s name to embrace other leukodystrophy conditions.
Sara has recently fostered a 10 year girl, so she avoids working at weekends to spend as much time as possible at home in Peckham doing simple family stuff.
ALD Life won the Triumph over Adversity award in the London Area finals.