I’ve decided to do a half marathon in February for the ALD Life charity. Unfortunately I didn’t get accepted into the London Marathon so I thought I’d give this one a go instead. This will be my first half marathon and my training is under way and bearing in mind all my training has been happening through winter this is going to be a bit of a challenge.

 

The charity I have chosen is called ALD Life which offers support to those affected with adrenoleukodystrophy and their families. Adrenoleukodystrophy (ALD) is a rare, inherited metabolic disorder. In this disorder, 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.

 

As this genetic disease has affected my family, it ultimately contributed to my fathers passing 15 years ago, I am aiming to raise a lot of money to help the charity in thire fight against it. Thank you for any help you can give and I’ll post an update once I complete the 13 mile run! Wish me luck.

Nikolai