Articles for The Myelin Project

Untitled Document Hello [firstname], Welcome to the The Myelin Project newsletter of upcoming events, articles, jobs and more from our membership. Articles for 8-Apr-08 to 8-May-08 ... [More Info]

Dr. Gerald Raymond Reports on Newborn Screening for X-linked Adrenoleukodystrophy and Other Peroxisomal Disorders X-linked adrenoleukodystrophy (ALD) is a genetic disorder occurring in 1 in 17,000 newborns. All ethnic groups are affected about equally. The disease causes a progressive loss of brain white matter and loss of adrenal gland function in boys who have the gene. It strikes previously healthy boys beginning school or young men just starting out in life. Over a third of boys with... [More Info]

Pelizaeus-Merzbacher Disease Application of a new progesterone antagonist to reduce PLP overexpression in a mouse model of Pelizaeus-Merzbacher Disease by Klaus-Armin Nave, PhD, Hauke Werner, PhD Max-Planck Institute of Experimental Medicine, Goettingen, Germany Pelizaeus-Merzbacher disease (PMD) is a severe leukodystrophy defined by mutations of the X chromosome-linked gene for proteolipid protein (PLP), the major myelin protein of the central nervous system... [More Info]

Good news for MLD Patients There is some very good news today for metachromatic leukodystrophy (MLD) patients and their families. The U.S.. Food and Drug Administration (FDA) has granted Orphan Drug status to Zymenex for Metazym, and approved the start of Phase II Clinical Trials. This step forward is particularly good news for The Myein Project. Through the British Trust for The Myelin Project, our branch in the United Kingdom, The Myelin Project has helped to fund development of... [More Info]

Dear ALD/AMN Families: I am writing to let you know about a study of the treatment of adrenomyeloneuropathy (AMN) which is now in progress at the Kennedy Krieger Institute and Johns Hopkins Hospital, both located in Baltimore, Maryland. Adult males and females with AMN who experience symptoms but who are, at minimum, able to walk 20 yards with crutches, canes, or a brace are eligible to enroll. The primary purpose of the study is to determine whether Lorenzo’s Oil (a 4:1 mixture of... [More Info]

This article will focus on advances made in the understanding and treatment of X-linked adrenoleukodystrophy. Many of these were made possible by funding, in whole or in part, from the Myelin Project. It is a pleasure to have this opportunity to help raise awareness of X-ALD and other demyelinating diseases among the practitioners of the Texas Panhandle.

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Below is the abstract for full text of this article visit Pub Med : Ann Neurol. 2001 Apr;49(4):512-7 Utilizing the plasma very long chain fatty acid assay, supplemented by mutation analysis and immunofluorescence assay, we determined the number of X-linked adrenoleukodystrophy (X-ALD) hemizygotes from the United States identified each year in the two laboratories that perform most of the assays in this country: the Kennedy Krieger Institute between 1981 and 1998 and the Mayo Clinic... [More Info]

Doctors have for the first time used gene therapy to treat two boys with the rare nervous disorder made famous through the film Lorenzo's Oil.

A Divine Appointment: Kyle’s Story This is a simple account of events which transpired on July 16, 2007 at a very different company called I Am Unique Special Care and Case Management, Inc., a home care agency. The company exists because of the direction of the Lord, “I Am.” Every individual is Unique and Special Care is given to each client. The Case Management is delivered with a standard of excellence, integrity, values, and moral ethics, often going far beyond what is routinely expected... [More Info]

Doctors find that mix of olive and rapeseed oils can help prevent a severe form of a rare disease affecting boys...