10th December 2014 Our son was diagnosed on May 1, 2007. After a successful transplant at the UofM in June, we lost Evan to post transplant complications on November 2. His caringbridge site details our new life with ALD, the wonderful doctors at the U, his successful transplant being the first boy to receive the new protocol in transplanting late diagnosis ALD boys. We now have lots of work to honor Evan\\\\\\\’s short life with saving others lives. If you would like to join in our campaign to Fight for Evan and Stop ALD, feel free to contact me. We have many goals: raising awareness and saving lives with new bone marrow, cord blood, and blood donors; educating ALD families who know about their family history and their options regarding having biological children; lobbying to place for ALD and other rare diseases on the prenatal screening list; and helping educatinf families with seriously ill children about the beauty of Palliative care and end of life issues.


17 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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