10th December 2014

My son Manny was diagnosed with ALD on March 31, 2003 at the age of 6 ½. His signs and symptoms were very minimal. Our Pediatrician thought he had a brain tumor that was effecting his vision. We were sent for an MRI and they found ALD instead and it was confirmed by VLCFA through Dr. Moser at Kennedy Krieger. He was treated with a stem cell transplant at Duke University Medical Center less than a month after his diagnosis. The disease progressed very rapidly and he passed away 7 months after he was diagnosed in my arms on November 7, 2003. Hold your children tight and tell them you love them everyday. You can read more about him at


18 hours ago

ALD Life

We are delighted to announce that on the 15th May 2019 ALD Life will become Alex, The Leukodystrophy Charity (Alex TLC), able to support people with all Leukodystrophies, where no other support is available.

We’ll still be providing people with ALD and AMN the high-quality information, support, services and networks they already expect from us, but we want to help people with similar conditions and their families to have access to these too.

We will be sharing more information about the launch in the coming weeks, so stay tuned!

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