Here are the latest news stories from Alex TLC and about topics we think you'll find useful.
Monday 7th to Sunday 13th August Dazzle4Rare was established in July of 2016 with a simple goal of signal boosting rare and undiagnosed community messages. Since that first event, we have been working with allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices.
ULF Conference recordings available to view Recordings from the United Leukodystrophy Foundation Family Conference 2023 are now available on ULF’s YouTube channel.
Replacing Personal Independence Payment (PIP) and DLA (Disability Living Allowance) Social Security Scotland delivers Adult Disability Payment and Child Disability Payment – money to help with the extra costs of being disabled or having a long-term condition.
Introduced to first state in US Illinois has become the first state in the US to screen newborns for Metachromatic Leukodystrophy (MLD).
Thomas’ parkrun challenge for Sam My name is Thomas Cawley and I’m 8 years old. I decided that I wanted to raise money for Alex TLC because it’s a charity that has supported my friend Sam and his family, since he was diagnosed with Adrenoleukodystrophy in March 2021. I decided that I would set myself the challenge of running every Hereford Parkrun in June, this meant that I had to run 3.1 miles every Saturday at the adult parkrun and 1.2 Miles every Sunday at the Junior Parkrun.
Highlighting the important role family carers of disabled people play, and the benefits of respite care Family carers often provide round-the-clock care and support to disabled loved ones at home. However, many struggle to access the respite they are entitled to, leaving them exhausted and burnt out. Sense’s new research, in the news today, shows that 1 in 5 carers can’t remember the last time they had a break.
