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Hilton Hotel Tower Bridge 2011

Our joint Get Together Family Weekend and Information Day in 2011 was, again, held at Hilton Hotel Tower Bridge in London. We started off the weekend with our Information Day, hosted by Mark Bostock – our trustee, with a practical information session on dealing with symptoms and a Q&A session with Dr Robin Lachmann. We had break-out groups so those in similar situations could advise and support each other. We held a focus group for those interested in helping Paola develop our Route Map Project. We also hosted our legendary quiz on the Friday evening. Adults enjoyed a yoga session, beauty treatments and massages, and the children had a session to design and decorate t-shirts and converse boots on Saturday. They then gave us a fashion show in the evening. During the afternoon, children and their parents were also given a personal tour of the Tower of London.

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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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