In the summer of 2011 ALD held their very first summer ball. 120 people attended and raised a total of £9,500 for the charity, which included a £1,400 bid for a holiday to Turkey donated by Exodus.
Exodus also pledged to donate £2 for every passenger who travelled with us to Turkey in 2011. With the season now over we are pleased to report that a cheque for over £2,000 has gone to ALD. This money will be added to funds already earmarked for a research project that is at the clinical trial stage using gene therapy for boys who do not have a bone marrow donor match but need a bone marrow transplant. Four boys have been successfully treated this way to date so this is looking very promising.
Watch the recent video of ALD Life on YouTube
Where in the world?
Exodus have chosen ALD Life as our UK Charity. The charity was founded by Sara Hunt, an ex employee, after her two sons were diagnosed with this rare, inherited metabolic disorder.
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What is ALD?
Adrenoleukodystrophy (ALD) is a disorder where the fatty covering (myelin sheath) of nerve fibres in the brain is lost, and the adrenal gland degenerates, usually leading to progressive neurological disability and death. A good portrayal of the effects of ALD on both the victim and family is the film “Lorenzo’s Oil”. It accurately describes the deterioration of a young boy with the disorder and resultant problems. The film does intimate that a cure (Lorenzo’s Oil) was found. Unfortunately this is not the case for those already with symptoms, although the oil is now a recognised and hopefully preventative treatment for all boys under 6 with the gene who are not presenting symptoms. It is now also being tested as a preventative treatment for men with adrenomyeloneuropathy (AMN) and females with symptoms. For further details and information on treatment please visit Sara’s website www.aldlife.org.
Sara set up the charity in 2004 in order to make as much advice and information about adrenoleukodystrophy in all its forms readily available to anyone, medical or personal, and to offer support to affected families.
What do we want to do?
We want to help Sara raise as much money and awareness of ALD as possible.
All money fundraised for ALD Life goes directly to support affected families and individuals. The profits from their two charity shops pay for all administration costs and Sara’s services are purely voluntary which ensures that any donations or monies raised will go straight to where it counts. (You may view their accounts via the Charity Commission website).
Currently the charity provides grants for families going through bone marrow transplant and bereavement and also helps fund care costs and equipment outside the remit of the NHS or in countries where services are limited. The majority of funds are used for these grants and to hold two annual events: the Information Day which brings together adults affected by ALD and AMN to discuss new research innovations and offer practical information, followed on by the ALD Family Weekend – an informal event to bring together families and individuals affected by ALD and AMN to meet, help and support each other in luxurious surroundings as a break from the day to day difficulties of living with ALD and AMN. In 2010 this event was held at the end of May and was attended by over 80 affected people and their families. Please see page 6 of the ALD December Newsletter for an account of how the weekend went.
In 2010 Exodus sponsored two places at the Family Weekend, at a cost of GBP400 per person. In 2011 the Family Weekend will be held as before at the Hilton Tower Bridge Hotel, London, between June 3rd and 5th.
In October, three members of staff from Exodus raised over GBP700 between them when they took part in the Great South Run. All of us continue to donate our unwanted items to give to the two charity shops, which are in Penge and Sydenham, south east London. This year the charity is looking to open its third charity shop in south east London.
We also took part in the annual Christmas raffle, raising GBP100 in raffle ticket sales, plus almost GBP50 for the sale of Christmas cards.
In 2011 Exodus donated GBP2000 towards appropriate research into the causes and treatment of adrenoleukodystrophy. Exodus also gave away a fantastic holiday to Turkey (including flights) for ALD Life’s Charity Auction at their 2011 Summer Ball.
How you can help
If you feel you would like to donate to ALD Life, please visit the ALD Life website
You may contact Sara direct at [email protected] to discuss other ways to help and to join the ALD Life mailing list.