Get Together Family Weekend

get together family weekend
Our Get Together Family Weekend is an opportunity for patients and families with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN) to meet others with the condition. It gives patients and families an opportunity to share experiences and support one another. We provide good quality entertainment, food, music and day trips to tourist attractions to help families get respite break.

In addition, we provide patients and families with an opportunity to speak with medical specialists and researchers to find out a little more about the condition and current medical research into ALD and AMN. We also provide patients and families with an opportunity to learn more about our charity’s activities.

Our next Get Together Family Weekend will take place in Spring 2016.
What people have been saying?
“A fantastic weekend – well organised and very beneficial for families”

“It was great to meet some fab friends + great support network. Sad to go home”

“I think the weekend is a great success, very well done to Sara for organising it”

“We had a fantastic weekend, you work so hard to pull it altogether”

“Thanks for a very interesting weekend with a lot of very nice people”

“I was very glad to meet you all and together we get stronger…You’re great!!!”

“Another fantastic weekend, we didn’t want to go home. Everyone is so lovely + supportive”

“I love them (Family Weekend). Not only for all the info you get, but also because it’s a good chance to meet other families going through the same as you”
Previous Events
Wychwood Park Cheshire 2014
East Sussex National Uckfield 2013
Belfry Hotel Birmingham 2012
Hilton Hotel Tower Bridge 2011
Hilton Hotel Tower Bridge 2010
Hilton Hotel Tower Bridge 2009



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I can’t believe that I have been working at ALD Life for over two months now.

Last week Sara organised a staff training for us around the values of ALD Life. It was a great day and among the many things we covered it was decided that “the best solutions come together by working collaboratively with common goals and purposes.” It is so nice to be part of a team so dedicated to supporting families and getting the word out about ALD and AMN.

We have started to put together ideas for next year’s Family Weekend and are looking at hotels in London with good parking facilities.

We think it will be a good idea to change things around a bit, does anybody have any suggestions for events, workshops, talk’s etc. that you would like to see, please let us know.

We also want to have a new name for our weekend. One suggestion “ALD Life Community Conference Weekend.” Can you come up with a better name?