British Trust for the Myelin Project

139 Hulme Hall Road
Cheadle Hulme
Stockport
SK8 6LQ

Tel: 0161 292 3191
Web: www.myelinproject.co.uk

The Myelin Project is an international, non-profit partnership of leading neurologists, researchers and informed lay-people. The Myelin Project's purpose is to find therapies for demyelinating diseases, both acquired (such as Multiple Sclerosis) and hereditary neurodegenerative disorders (the Leukodystrophies).

The British Trust for the Myelin Project (contact details above) also provide information and support to people with myelin related conditions. The support is provided by laypeople who are also affected by these diseases and can relate to experiences and mixed emotions their members may go through. All support and information is provided free of charge. They raise funds solely through public fundraising.

They also exist as a sounding board for our members to pass on information they might discover through the Internet, media or even personal experiences.

Leukodystrophy diseases include:

• 18q Syndrome with Deficiency of Myelin Basic Protein
• Acute Disseminated Encephalomyeolitis (ADEM)
• Acute disseminated Leukoencephalitis
• Acute Hemorrhagic Leukoencephalopathy
• Adrenoleukodystrophy (ALD)
• Adrenomyeloneuropathy (AMN)
• Aicardi-Goutières Syndrome
• Alexander Disease
• Autosomal Dominant Diffure Leukoencephalopathy with Neuroaxonal Spheroids
• Autosomal Dominant Late Onset Leukoencephalopathy
• Childhood Ataxia with Diffuse CNS Hypomyelination (CACH or Vanishing White Matter Disease)
• Canavan Disease, Cerebral Autosomal Dominant Arteropathy with Subcortal Infarcts and Leukoencephalopathy (CADISIL), Cerebrotendinous Xanthomatosis (CTX)
• Craniometaphysical Dysplasia with Leukoencephalopathy
• Extensive Cerebral White Matter Abnormality without Clinical Symptoms
• Familial Leukodystrophy with Adult Onset Dementia and Abnormal Glycolipid Storage
• Globoid Cell Leukodystrophy also known as Krabbe Disease
• Hereditary Adult Onset Leukodystrophy Simulating Chronic Progressive Multiple Sclerosis
• Lipomembranous Osteodysplasia with Leukodystrophy (Nasu Disease)
• Metachromatic Leukodystrophy (MLD)
• Megalencephalic Leukodystrophy with Subcortal Cysts (MLC)
• Neonatal ALD
• Neuroaxonal Leukoencephalopathy with Axonal Spheroids
• Oculodetatoldigital Dysplasia with Cerebral White Matter Abnormalities
• Orthochormatic Leukodystrophy with Pigmented Glia
• Ovarioleukodystrophy Syndrome
• Pelizaeus-Merzbacher Disease (PMD)
• Phenylketonuria (PKU), Refsum Disease
• Sjogren-Larssen Syndrome
• Sudanophilic Leukodystrophy
• Van der Knaap Syndrome (Vacuolating Leukodystrophy with Subcortal Cysts or MLC)
• Vanishing White Matter Disease (Childhood Ataxia with Diffuse CNS Hypomyelination or CACH)
• X-Linked ALD
• Zellweger Spectrum and Zellweger Syndrome.