The ArchAngel Trust is managed by a dedicated team of trustees:
About the ArchAngel MLD Trust
The Trust was founded by the community in Ava's school. She is a much loved girl and her family is part of our children's lives. The bravery of Ava's parents to look for a cure has been inspiring and we have come together to fulfill their wishes of supporting those who are working relentlessly to find a cure for rare and terminal diseases.
What is the ArchAngel MLD Trust?
The ArchAngel MLD Trust is an unincorporated association governed by a constitution. Registered Charity Number 1157825. The Trust is run by volunteer charity trustees appointed to hold office for a fixed term of one year.
Can I organise a fundraiser?
Yes, of course. Please contact us at Contact@ArchAngel.org.uk to discuss.
The Trust was set up to help people suffering from MLD in whatever way it can including making grants to MLD affected children and to charities and organisations engaged in research, medical care and social care.
There are a number of hospitals around the world involved in clinical trials to improve the effectiveness and reduce the risks of bone marrow and stem cell transplants and gene therapy for MLD patients, including the San Raffaele Hospital in Milan where Ava received treatment and which was funded by Foundation Telethon and Glaxo Smith Kline.
ArchAngel is also currently spearheading a campaign to have MLD added to the newborn heel-prick blood test, which is currently given to all babies at the age of 6 days old in the UK. Whilst finding a cure for MLD is imperative, getting a timely diagnosis is equally as crucial. Catching cases at birth would unquestionably save lives. We are now actively raising funds for this campaign. More about the newborn screening campaign.
About the MLD newborn screening campaign
Without early identification and treatment, children with inherited metabolic disorders will lead a life of disability or may die. Early identification of babies at risk from rare disorders can ensure that they receive immediate life saving or life enhancing treatment.
Owing to the rarity of MLD, many children are misdiagnosed or diagnosed at a point where the disease has already progressed too far for life-saving treatment such as Gene Therapy to be of benefit. In the United Kingdom (UK) newborn babies are currently screened for 9 inherited metabolic disorders. ArchAngel is dedicated to ensuring that MLD is added to the list.
Unfortunately, accepting new disorders onto the UK newborn screening programme remains a very lengthy process and an expensive one. Owing to shortfalls in NHS funding, patient organisations are forced to commission the research and pilot schemes required as part of the application process. ArchAngel is now actively fundraising for the MLD application, which will hopefully be submitted to the Government in 2017.
ArchAngel is working with a number of organisations across the world, including Glaxo Smith Kline and The Save Babies Through Screening Foundation (UK), who are key advocates for the extension of the UK newborn screening programme. ArchAngel is also a member of the UK Patient Advocates for Newborn Screening Group, who are actively working with the British Inherited Metabolic Diseases Group on a strategy to raise awareness with politicians and NHS England of the criticality of newborn screening research, economic evaluation and pilot studies.