LATEST NEWS........

METACHROMATIC LEUKODYSTROPHY (MLD) TRIAL 2006
Zymenex a company in Denmark will be holding the first human trials for Enzyme Replacement Therapy for MLD (and plan to hold a similar trial for Krabbe in the future). We can help make this a reality with your help. Please click here for more details.
 

PETITION TO PARLIAMENT

Taking action for the future, now...
The British Trust for The Myelin Project is starting a grassroots movement to introduce Universal Newborn Screening in the UK. Similiar movements have been taking place in the States with such organisations as Hunter's Hope. Here in the UK, working with other Leukodystrophy support groups like ALD Life and Hunter's Hope, among others; The Myelin Project has formed a Petition to Parliament. Click here for more details on how you can make a difference now.

WRISTBANDS ARE AVAILABLE!
Stylish, green and white marbled wristbands are available. Imprinted with : "FIGHT MS & LEUKODYSTROPHIES" as well as our website address, these bands are a great way to raise awareness and vital funds for research. The cost is only £3/per band which includes posting. Call us on +44(0)1457 865 639 to order yours today. They make great gifts to friends and family and keep them in mind for stocking stuffers too! Click here to order

LORENZO'S OIL IS VINDICATED

A follow-up study of Lorenzo's Oil confirms that the Oil is effective in delaying the onset of adrenoleukodystrophy (ALD) in boys without symptoms who started the therapy under the age of six. Dr. Hugo Moser of Kennedy Krieger Institute in Baltimore, Maryland, said the results validate those of his earlier international study. The reliability of the results is enhanced by the fact that the original trial and the follow-up study, which used different statistical methods, led to similar conclusions. A further issue that may be addressed through longer follow-up of patients is whether Lorenzo's Oil has the ability to not only delay but avoid completely the onset of childhood ALD.
Lorenzo's Oil is also effective in slowing the progression of the disease in adults with adrenomyeloneuropathy (AMN). Dr. Wolfgang Köhler of Saxonian State Hospital Hubertusburg in Wermsdorf, Germany conducted a study of 50 AMN patients who took the oil for a mean period of 6.3 years: Overall, 84% were clinically better than what may have been expected on the basis of the natural course of the disease, while a subgroup of 48% remained stable or improved.
FOR A COPY OF THE RESEARCH PAPER OR MORE INFORMATION, CONTACT OUR OFFICE.

STEM CELLS ARE NOT AS CONTROVERSIAL
 

National Geographic Magazine's July 2005 Issue features the Stem Cell divide in both political and religious areas, but also goes on to explain, in detail, about Stem Cells and their origin and potential, life saving use. It is a very unbiased viewpoint, discussing all sides but, more interesting, it gives the full background about Stem Cells as well as describes that lives have already been saved and the potential they have to save so many more.
Our Myelin Project families are already familiar with Stem Cell research and their potential in possible therapies for demyelinating diseases. Our office recommends reading this article, if you can acquire it either online or, email our office for more information at info@myelinproject.co.uk.
Not surprising though, is that some of the researchers and facilities at the head of the Stem Cell research are part of The Myelin Project's International Workgroup.