Here are the latest news stories from Alex TLC and about topics we think you'll find useful.
Update to the emergency guidelines section on the BIMDG website Alex TLC has worked tirelessly with The British Inherited Metabolic Diseases Group (BIMDG), requesting for them to include emergency guidelines for patients with adrenoleukodystrophy (ALD) who also have adrenal insufficiency (Addison’s disease) in their emergency guidelines section on the BIMDG website.
On our 9th Day of Christmas, our Support Services Manager, Karen Harrison, gives us an insight into her family’s Christmas. My identical twin sons, Cameron, and Alexander, were diagnosed with childhood onset cerebral adrenoleukodystrophy (ALD) in 2002, up until then we had just been a normal family enjoying life…
On our 4th Day of Christmas, we remember a cheeky, lovable boy called Lewis. Lewis was one of a kind, cheeky but so lovable. He was diagnosed at a young age of around 3/4 with autism and ADHD.
From midday on 30th November until midday on 7th December, we are hoping to raise £4000 which will be DOUBLED to £8000.
Alex TLC are proud to be part of the group of patient organisations campaigning to expand the newborn screening programme, and we welcome Matt Hancock’s personal mission to make this happen.
Aired on the 10th May – Our interview was shown on BBC South East evening news. Those interviewed included our beneficiaries Rosie and Alfie alongside Dr Davison, Britt Ekland and our support services manager Karen Harrison. #newbornscreening #ALD. Watch it here.
