Tuesday, 11 March 2014

Adrenoleukodystrophy newsletter - a source of relevant information for any fellow sufferers

I receive a periodical newsletter from ALD Life and it contains a few links that may be interesting to anyone for whom this organisation is relevant.
ALD Life is a charity run by a lady who has two children affected by this dreadful condition. You can view the web site at http://www.aldlife.org/

Rather than attempting to transcribe the latest email I thought I'd just paste it in here for you to read.
Please note the social networking links at the foot of the newsletter.

Dear Mark Wilcox,
Last year, we compiled an array of case studies from patients and families affected with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN). The main aim of gathering case studies was to show the general public the impact diagnosis of ALD or AMN has on patients, and their families and carers.
If you would like to get involved in sharing your story, please complete this short survey here:http://www.surveymonkey.com/s/8QP5BKF
This month, we will introducing a case study from patients and families with ALD and AMN on our social media pages, every Monday.
Please check out case studies on our social media pages every Monday, and remember to share or retweet to help us raise awareness of this tragic and devastating disorder.
Thanks for the support,
Sara & the ALD Life team

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