The Get Together Family Weekend is our Annual Event for patients and families affected by Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN). It gives patients and families with the chance to meet others, share experiences and provide support to each other. We also provide patients and families with entertainment, food, music and visits to local tourist attractions to help them get away from the daily rigors of life. It also gives us the chance to keep our members up-to-date with the latest news about our charity and the health and social care side of ALD and AMN.
Get Together Family Weekend 2015
Please keep updated here to book for our Get Together Family Weekend in 2015.
Statement from Sara Hunt, founder and CEO: “We appreciate that some of you may well be very nervous of attending our weekend get together’s for various reasons. You may not wish to see affected symptomatic boys, you may not feel comfortable mixing with people you don’t know, you may be worried about what you may learn about ALD and AMN, you may be worried that we don’t have the facilities to cater for your or your child’s disability needs; these are all common fears that many of our members have. We are trying hard to encourage new families and individuals to come to our event as, from experience, we know that most who attend come back when they can and really gain a lot of insight as well as making lasting and supportive friendships.
Following feedback from our last event we are currently working on setting up a “buddy system” for new attendees where we will put you in touch with someone attending the event who has similar circumstances to your own. You will then have the opportunity to speak to someone prior to the event about what to expect, how they felt about their first get together and how it has helped them. We will then ensure that you are seated with your “buddy” at the event so you don’t feel too lost or isolated.
We deliberately keep the event as informal as possible as it is designed to be a relief from living with ALD or AMN as well as being a time to acquire information relating to your condition. You can join in as much or as little as you like and we do not expect anybody to do anything they are not willing to participate in.”
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”
Get Together Family Weekend 2014
Get Together Family Weekend 2013
Get Together Family Weekend 2012
Get Together Family Weekend 2011
Get Together Family Weekend 2010
Get Together Family Weekend 2009