Snowdrops representing MLD Support Association UK

About us

MLD Support Association UK came into being after the family of a little girl, Millie D’Cruz suffering from this condition, said they would like to help other families in similar circumstances, and that they were prepared to donate an initial ‘start-up’ amount to set up a national charity for that purpose.

The interested parties met in March 2012 to discuss how this could be accomplished, and who might be appointed as Trustees. It was felt that, initially, there should be two people with experience of the condition – Twila D’Cruz, Millie’s mother and Vivienne Clark who has a son with Adult-onset MLD, and also Bob Stott, who had experience of communication and fund raising, but with no direct link to MLD.

The appointed trustees met on 25th July 2012 to decide on a Constitution and the aims and objectives. The priority aim of the charity is to support families and sufferers of MLD by way of shared information from people in similar circumstances who have already experienced the effects of the condition and/or any treatments available.

The secondary aim is to support research into therapeutic treatments for the condition through research grants to bona fide institutes engaged in such projects. Initially this would be via ‘Brains for Brain’ (The European Task Force on Brain and Neurodegenerative Lysosomal Storage Disorders) who have several groups of clinicians and research scientists seeking a way to correct the enzyme deficiencies which cause the condition. The donation level was set at a level of 20% of all income received.

The Constitution was finalised on 18th December 2012, and application made to The Charities Commission for registration as a Charitable Incorporated Institution (C.I.O.). We received Charity Status on 21st January 2013 and are now eager to support all families who need our help.

 

The Snowdrop

We have adopted the snowdrop as our emblem because it is a symbol of hope that signals the end of winter and the beginning of spring. Secondly, the whiteness of the flower reminds us of the brain and central nervous system’s white matter, which as a result of the condition, becomes stained and degenerates. The literal translation of MLD means (meta) change, (chromatic) colour, (leuko) white matter and (dystrophy) degeneration.

In time, we are hoping to develop a range of snowdrop inspired gifts to help raise money, which in turn will enable us to offer support and bring hope to those families who are affected by the condition.

About us

MLD Support Association UK was set up to bring hope to families in the fight to eradicate Metachromatic Leukodystrophy (MLD). Our aim is to provide support by way of shared information from people in similar circumstances who have already experienced the effects of the condition and/or any treatments available.

MLD Support Association UK

MLD Support Association UK is a
Registered Charity Number 1150542

Patrons
Professor Timothy M Cox, MD, FRCP, FMedSci
Suzi Digby (Lady Eatwell) OBE
Iain Stewart MP

Contact

MLD Support Association UK
Floor 5
Amphenol Business Complex
Thanet Way
Whitstable
CT5 3SB

Tel: 07977 440809
admin@mldsupportuk.org.uk