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What we do?

ALD Life Fundraisers
ALD Life is a patient support group and registered charity for patients and families with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN).

What we do?
• Provide practical support, advice and information to patients and families with Adrenoleukodystrophy (ALD) and Adrenomyeloneuropathy (AMN)
• Raise awareness and improve public education into both conditions
• Advance medical research looking into finding better treatment

For example, last year we:
brought together more than 30 families to share experiences and make new friends with families going through similar circumstances
• provided financial support to more than 10 families to help get specialist equipment, full-time care and regular treatment, including a Bone Marrow Transplant (BMT)
• started a Patient Liaison Service to provide full-time support to families, over the telephone, by email, and in person
• campaigned to make sure endocrinologists in the UK start to test young boys with primary idiopathic adrenal insufficiency for the ALD gene


Thank you for your support! ...

We played a Mixed game against LSE today and had a 6-10 loss in a very well fought and fun match! Thank you LSE for being great opponents today! Also, as in the photos, we have all painted our faces the colours of Rare Disease Day which is upcoming on the 28th to show support for ALD Life, the charity who help patients and families of Adrenoleukodystrophy and Adrenomyeloneuropathy. Please help us to provide better awareness and find better treatments. You can help by raising awareness and taking part or donating by texting 'ALDL18 £5' to 70070. Or you can donate on Just Giving here - www.justgiving.com/campaigns/charity/aldlife/rarediseaseday2018 We want anyone and everyone to paint their faces and pass it along! Man of the Match: Aidan Women of the Match: Sarah, Pip, Jess, Amy #LUSL #Ultimate #Ultimatefrisbee #Outdoors #Outdoormixed #Rarediseaseday #warpaint #blueandwhitearmy #Stmarys #simmies #LSE #Beavers #Ostrich #HalfMatchMan #Substitutionsmatter

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