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Updates

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lennon001

We have updated Lennon's Story with a part two.  This has more of what he went through and also has some GOOD NEWS.  Click on the picture above to view them

Joe_superman

We have updated the pictures of Joe with some new music.  Click on the picture above to view them.

 

aldlife09_051

 

We have updated the uploaded the pictures from the ALD Life weekend London get-together in May 2009.  Click on the picture above to see all the photos.

 

Gemma's Story

 

  • Joe's cousin Gemma has written a story about why Joe is her idol, this can be found under Joe's Family section or just click on her picture above.

 

Lennon

  • We have updated Lennon's page with his mum & dads story about his transplant.  We have also included a couple of photos when he had his bone marrow transplant.  This can also be found under Joe's Family or by clicking on his picture above.

guestbook

  • We have also updated the guestbook and used the one from the old website and imported the comments we have recived since.  It is easier to use and is a lot quicker, please take time to leave us a message, we appreciate all comments

 
 

ALD Medical News

19/05/2010, Lentigen receives NIH STTR grant for... >>
12/03/2010, Genetix Pharmaceuticals announces... >>
07/11/2009, Genetix Pharmaceuticals develops a gene... >>

 

 

News from Space

02/09/2010, 'Plymouth Rock' Deep Space Asteroid... >>
02/09/2010, Hurricane Earl Photographed From Space... >>
02/09/2010, Starburst Galaxy Unleashes Gassy... >>
31/08/2010, NASA and ATK Successfully Test... >>
24/08/2010, Full-Scale NASA and ATK Solid Rocket... >>

 

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What is ALD?

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.


Description thanks to ALD LIFE
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