ArchAngel MLD Trust was established to support medical teams around the world who are working to help people with the rare genetic illness Metachromatic Leukodystrophy (MLD). ArchAngel also awards grants to help UK families with MLD affected children and is spearheading a campaign to have all UK babies screened for MLD at birth.
Metachromatic Leukodystrophy (MLD) is a rare genetically inherited illness which affects around 1 in every 100,000 people. An inherent error in the patients metabolic system causes progressive damage to the nervous system, resulting in life-long disability or death. It is classified as both a ‘demyelinating illness’ (leukodystrophy) and a ‘lysosomal storage disorder’ (LSD).
The Trust was set up to help people suffering from MLD in whatever way it can including making grants to charities and organisations engaged in MLD research, medical care and social care. There are a number of hospitals around the world involved in research and clinical trials to improve the outcomes of children diagnosed with the condition. ArchAngel is particularly proud to support San Raffaele Hospital in Milan, where a Gene Therapy treatment for MLD has been successfully developed.
ArchAngel also awards private grants to individual families for specialist equipment, therapies and professional carers. Shortfalls in NHS budgets lead to equipment and therapy not being provided, or unacceptably long lead times of several months. ArchAngel has discreetly helped a number of UK families to purchase items including wheelchairs, bicycles, breathing apparatus and sensory toys; as well as blocks of much needed physiotherapy; home adaptations; and professional carers to provide long-term caregivers with respite.
We are also building a campaign to have MLD added to the UK’s Newborn Bloodspot (NBS) Screening Programme. This is a heel-prick blood test which is currently given to all babies at the age of 5 or 6 days old to test for a number of rare conditions. Whilst finding a cure for MLD is imperative, getting a timely diagnosis is equally as crucial. Catching cases at birth would unquestionably save lives.
The team at ArchAngel are not qualified to give clinical or emotional support to suffering families, however can recommend a number of organisations who can help deal with this type of issue.