MLD is a rare disease and many health professionals know little about the symptoms and outcomes. MLD Support Association UK is committed to providing information to help with a correct diagnosis and to provide details of on-going care or treatment options.
Information for healthcare professionals
We urgently need donations so that we can continue to support families and also help to find a cure for MLD. If you have been affected by MLD or know a family that has and would like to make a donation, volunteer or fundraise for us, then we can point you in the right direction.
Support our work
MLD (Metachromatic Leukodystrophy) is a rare genetic condition, but when it strikes it brings devastation to the entire family. Our primary aim is to provide support to families, personally, through our Website and Facebook group and at annual Family Conferences and Fun Days. As MLD is a rare disease, many health professionals know very little about the symptoms and outcomes. We are committed to providing information to ensure a correct diagnosis and also to provide current details of on-going care or treatment options. MLD Support Association UK also organises and sponsors a bi-annual Scientific Conference where scientists and clinicians who specialise in Leukodystrophies, both from the UK and overseas, can meet up to learn about current treatment and research.
Read our family case studies
News and Stories
MLD Support Association UK also organises a bi-annual Scientific Conference where scientists and clinicians who specialise in Leukodystrophies, both from the UK and overseas, can meet up to learn about current treatment and research. If you are interested in attending our next Scientific Conference in 2020 please contact us
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 MLD, becomes stained and degenerates. The literal translation of MLD means (meta) change, (chromatic) colour, (leuko) white matter and (dystrophy) degeneration. About us
Millie D’Cruz Parsley celebrated her birthday in April 2010 as a normal, healthy six-year-old child. Within a couple of months, her inability to keep pace with her peers, alongside some issues with her balance, had been noticed, and her condition was eventually diagnosed as MLD (Juvenile onset). Twila wanted to reach out and help other families with MLD, so in 2012 she donated funds to start the MLD Support Association UK. Millie’s story
Scott was born on 5 April 1972. He was healthy and happy and progressed easily through school. He was fiercely academic and at 18 he gained a place in a top UK university. Sadly, Adult-Onset MLD struck and by the age of 22 he was given a terminal diagnosis. Scott’s mother discovered that Bone Marrow Transplants were being carried out in the USA and in March 1996 Scott had a Bone Marrow Transplant with his brother, Russell, as donor. The BMT was a success and today he is the longest survivor of MLD in the UK and still remains stable. Scott’s story
Jeans for Genes was established in 1994 by Children’s Medical Research Institute to fund revolutionary research that helps diagnose, understand, and find cures or treatments for conditions affecting children, including genetic diseases, cancer, and epilepsy. 1 in 20 children are born with a genetic disease or birth defect and you are likely to know and care about someone affected. MLD Support Association promotes Jeans for Genes day every year and we hope you can enrol your school, workplace or university to help us raise funds. Find out about Jeans for Genes day
The BRAINS FOR BRAIN Foundation is an International Task Force formed by outstanding scientists and clinicians who are leaders in the neurological field, grouped together with Biotech companies to create coordinated and organised research projects aimed at the comprehension and cure of rare genetic diseases that affect and seriously damage the brain. Every year they hold a Workshop and the MLD Support Association UK has been invited every year since 2013. Vivienne Clark will be attending in January 2019. Brains for Brains
We urgently need donations so that we can continue to support families, provide information for health professionals and fund research to help find a cure for MLD. Cheques should be made payable to ‘MLD Support Association UK’ and sent to the office address in Whitstable displayed at the bottom of this page.
Alternatively, you can make a donation through JustGiving. Click on the purple button and please do remember to ‘Gift Aid it’ if you are a UK tax payer. This means we can reclaim an extra 25% in tax at no extra cost to you.