Geometry.Net - Health_Conditions: Leukodystrophy

United Leukodystrophy Foundation - You Are Not Alone
Nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in their health.
http://www.ulf.org/

Extractions: Buy Now Mission Statement: The United Leukodystrophy Foundation is dedicated to helping children and adults who have Leukodystrophy and assisting the family members, professionals and support services that serve them. The ULF is committed to the identification, treatment and cure of all leukodystrophies through programs of education, advocacy, research and service. Please be patient while we construct our new website.
Leukodystrophy
CHORUS document on the different types of leukodystrophy. A little technical.
http://chorus.rad.mcw.edu/doc/00231.html
Brianna
Personal page about how this neurological disorder affects children and their families. Provides links to resources and support.
http://hometown.aol.com/ydb739094/brianna.html
The Family Village / Library / Leukodystrophy
Resources on Adrenoleukodystrophy, Alexander Disease, Canavan Disease, Krabbes Disease, Metachromatic leukodystrophy, and Refsum s Disease.
http://www.familyvillage.wisc.edu/lib_leukodystrophy.html

Extractions: Website: http://www.ulf.org/ This is a nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease. In addition, it provides assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness; acting as an information source for health care providers; and promoting and supporting research into causes, treatments, and prevention of the leukodystrophies. The ULF is supported solely by donations. Alexander Disease
The Myelin Project: Home
Works to accelerate research on myelin repair. Myelin is damaged by multiple sclerosis, leukodystrophy and the many other demyelinating disorders.
http://www.myelin.org/

Extractions: The film tells the real-life story of Lorenzo Odone and his parents, Augusto and Michaela, inventors of the oil and founders of The Myelin Project. Information About Lorenzo's Oil and How it Works Oligodendrocytes produce the myelin sheath, which wraps in layers around axons. Myelin is produced by specialized cells: oligodendrocytes in the central nervous system, and Schwann cells in the peripheral nervous system. Myelin sheaths wrap themselves around axons, the threadlike extensions of neurons that make up nerve fibers. Each oligodendrocyte can myelinate several axons. ...an international grassroots organization whose mission is to accelerate medical research on myelin repair. EVENT: CURE ALD Fundraiser Lorenzos Oil: Advances in the Treatment of Neurometabolic Disorders Follow-up of 89 Asymptomatic Patients With Adrenoleukodystrophy Treated With Lorenzos Oil The Myelin Project 2004 Year-End Report is out ... now on DVD..
MLD Foundation - Support For Families With Metachromatic Leukodystrophy
Information, support, education and online networking for families throughout the world dealing with Metachromatic leukodystrophy (MLD).
http://www.mldfoundation.org
Introduction To Leukodystrophy
Symptoms presented with this disease, the diagnosis and the treatment.
http://www.ulf.org/ulf/intro/

Extractions: 2304 Highland Drive Sycamore, Illinois 60178 Phone: (800) 728-5483 FAX: (815) 895-2432 Outlined below are brief introductions to the leukodystrophies. Further extensive in-depth research information is available on these subjects and more through the ULF library of printed and videotape materials. When requesting further information please let us know whether you are a professional or lay-person so that we can respond with the appropriate information level. Introduction Patterns of Inheritance Adrenoleukodystrophy (ALD)/Adrenomyeloneuropathy (AMN) Aicardi-Goutieres Syndrome ... Zellweger Syndrome INTRODUCTION The leukodystrophies are genetically determined progressive disorders that affect the brain, spinal cord and peripheral nerves. The term leukodystrophy derives from the Greek words "leuko" meaning white and referring to the white matter of the nervous system and "dystrophy" meaning imperfect growth or development. White matter is white to the naked eye because it contains a complex chemical substance called the myelin sheath. Myelin contains a variety of fatty substances or lipids. Its function is to insulate the axon through which nerve impulses are conducted, much as does insulation around an electric wire; the axon being the biological equivalent of the wire. The myelin sheath is a very complex substance. It is made up of at least ten, and probably more distinct chemicals. Each of the leukodystrophies affects one (and only one) of these substances that all affect the myelin sheath in some way, but otherwise, they are totally separate. Leukodystrophy of one type, does not in any way predispose to, or increase the risk of another type of leukodystrophy.
Metachromatic Leukodystrophy Information Page National Institute
Metachromatic leukodystrophy information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126
Leukodystrophy Information Page National Institute Of
leukodystrophy information sheet compiled by NINDS.
http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126
Undiagnosed Leukodystrophy
Lauren's homepage, a six year old from Melbourne, Australia with an as yet undiagnosed neurological condition thought to be genetic.
http://members.tripod.com/phillipslauren

Extractions: Search: Lycos Tripod Murderball Share This Page Report Abuse Edit your Site ... Next My Homepage About Me My Family My School My Carers My Story My Story Continued My Story Continued Latest Happenings Past News Lauren's Homepage Hello, my name is Lauren Phillips. Mum and dad are writing about me because they think I am very special. I have just had my ninth birthday. Each year my mum, Carolyn goes to a lot of trouble to make a great looking birthday cake which everyone admires and loves to eat. Unfortunately I've never tasted one of mum's cakes or any other food she has prepared. I'm fed through a plastic tube in my stomach because I can't eat or swallow properly. There are other things about me that make me different from other children my age, so I'll let mum and dad explain Feel free to send a message via email to: phillipspc@optusnet.com.au
United Leukodystrophy Foundation - You Are Not Alone
United leukodystrophy Foundation The leukodystrophies are = genetically determined progressive disorders that affect the brain, = spinal cord and
http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126
Globoid Cell (Krabbe) Leukodystrophy
a CHORUS notecard document about globoid cell (Krabbe) leukodystrophy.
http://chorus.rad.mcw.edu/doc/00174.html
Introduction To Leukodystrophy
UNITED leukodystrophy FOUNDATION 2304 Highland Drive Sycamore, Illinois 60178 Phone (800) 7285483
http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126
Leukodystrophy
CHORUS document on the different types of leukodystrophy. A little technical.
http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126
Leukodystrophy Information Page: National Institute Of Neurological Disorders An
leukodystrophy information sheet compiled by NINDS.
http://www.ninds.nih.gov/disorders/leukodystrophy/leukodystrophy.htm

Extractions: Treatment for most of the leukodystrophies is symptomatic and supportive, and may include medications, physical, occupational, and speech therapies; and nutritional, educational, and recreational programs. Bone marrow transplantation is showing promise for a few of the leukodystrophies. What is the prognosis?
Natalie's Miracle
Natalie suffers from Metachromatic leukodystrophy. This site is about her prayers for healing.
http://onin.com/natalie/
Hunter's Hope Foundation
Formed in honor of infant son, Hunter, who was diagnosed with Krabbe disease (GloboidCell leukodystrophy). Supports research on this and other
http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126
Metachromatic Leukodystrophy Information Page: National Institute Of Neurologica
Metachromatic leukodystrophy information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
http://www.ninds.nih.gov/disorders/metachromatic_leukodystrophy/metachromatic_le

Extractions: Metachromatic leukodystrophy (MLD) is one of a group of genetic disorders called the leukodystrophies. These diseases impair the growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers. Myelin, which lends its color to the white matter of the brain, is a complex substance made up of at least 10 different enzymes. The leukodystrophies are caused by genetic defects in how myelin produces or metabolizes these enzymes. Each of the leukodystrophies is the result of a defect in the gene that controls one (and only one) of the enzymes. MLD is caused by a deficiency of the enzyme
Adam Smith
Artist tells of his fight against metachromatic leukodystrophy, and shares artwork, poetry, beliefs, and photos.
http://www.notthatadamsmith.com/

Extractions: Print by Adam Smith Adam Smith is an artist who works with a variety of media. He also writes poetry and plays trumpet. Adam's art is inspired by the beauty and folk traditions of his home state of New Mexico, his deep religious faith, his love of horses and his Greek heritage. Adam Smith's art can be acquired through VSA Arts of New Mexico , or contact
National Tay-Sachs Allied Diseases Association
An organization offering support and programs geared to families affected by TaySachs Disease and over 40 other fatal degenerative genetic
http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

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