10th December 2014

donny was diagnosed with ALD just before christmas last,he had been admitted to hospital, in february 2007,suffering from what was thought as a mild stroke,it was evident that there was something more to it than that.he had all the tests done and it took a bit of time before ALD was found, by which time Donny had deteriorated to a point where he couldn\’t communicate with us,it was so rapid,Donny was a happy carefree man and Quite unique, sadly he died on 26th July, he will be sorely missed and never forgotten by all. Reading through all the experiences on ALD life has brought it home just how extremely traumatising ALD is, let’s hope there are large breakthroughs in research soon.,My thanks to Sara for getting in touch while going through the bone marrow transpant with her son Ayden,and putting me in touch with Christianne Garret who’s husband had ALD and for their help,about pegfeeding, Roddy Morrison


20 hours ago

ALD Life

Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at or ‪404-778-8518‬. ...

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