April 2017

Adult Bone Marrow Transplants for Cerebral ALD

April 2017

The long-awaited paper on long term outcomes of transplanting adults to halt the progression of cerebral ALD has been published in Brain. The paper concludes that adult transplant has similar results to transplanting children with cerebral ALD when done early, and in patients with limited AMN symptoms, but does little to halt the progression of AMN. This paper will be used in an upcoming review on NHS protocol for transplantations in appropriate adult AMN patients. To see the paper in full please click here.

New Born Screening for Adrenoleukodystrophy – UK NSC decision announced

April 2017

The National Screening Committee have said no to ALD Life’s proposal to add ALD to the list of conditions screened for at birth. Naturally, this is a very disappointing result, but it does mean that ALD is on their radar and will come up for review again in 2019. Working with UK ALD and AMN specialists, plans are in place to appeal the decision and we will keep you posted on progress. Needless-to-say we will not be giving up!