Charity Concert in aid of ALD for Valerie Kavanagh whose son Alex is 8 and has the disease. Please support this event.
The 1992 movie “Lorenzo’s Oil” brought the rare disorder called adrenoleukodystrophy (ALD) to the world’s attention. Only boys have the most severe form of ALD. It is a progressive degenerative myelin disorder, meaning that myelin, the “insulation” around nerves, breaks down over time. Without myelin, nerves are unable to function normally, or at all. Unfortunately, the body cannot grow replacement myelin, so the disorder is progressive and it gets worse over time.
There are several forms that ALD can take. The most devastating type, what Lorenzo Odone had, is the childhood cerebral form, meaning that nerves in the brain are destroyed. About 35 to 40 percent of all cases of ALD are this type, which usually appears between 4 and 8 years of age in boys. These boys will usually become totally disabled in 6 months to 2 years, and die sometime after. Unfortunately not much research has been done in the last 20 years so every penny of the money raised will be going to that.
The concert will be in Clancys Bar in the Old Town, Puerto Del Carmen, Lanzarote on the 21st December 2012. Hotel rooms can be arranged for just 28€ per night and they sleep upto 3 people. If anyone can please donate raffle prizes or buy raffle tickets that would be fantastic. If you would like more information just get in touch with Sandy Bart on 608343297 or through Facebook, just search ALD Charity Concert Lanzarote.
