21. Adrenoleukodystrophy Press Releases: National Institute Of Neurological Disorder Information sheet on adrenoleukodystrophy compiled by NINDS. http://www.ninds.nih.gov/disorders/adrenoleukodystrophy/press_adrenoleukodystrop

Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system More about Adrenoleukodystrophy Studies with patients Research literature Press releases Search NINDS... (help) Contact Us My Privacy NINDS is part of the National Institutes of Health You are here: Home Disorders Adrenoleukodystrophy Adrenoleukodystrophy Press Releases Transplanted Neural Stem Cells Migrate Throughout the Abnormal Brain, Reduce Disease Symptoms Monday, Jun 7, 1999 For years, researchers have probed the mysteries of neural stem cells immature cells that can differentiate into all the cell types that make up the brain with the idea that they might be useful for treating brain disorders such as Parkinson's disease. Important new animal research now suggests that these cells may be effective in treating a much broader array of brain diseases than previously anticipated, including Alzheimer's disease and many childhood brain disorders. National Institute of Neurological Disorders and Stroke Home About NINDS Disorders Funding ... Accessibility

22. Adrenoleukodystrophy (ALD) A Case Study adrenoleukodystrophy (ALD) A Case Study Using the Film "Lorenzo's Oil" Linda Gostinger 1994 Woodrow Wilson Biology Institute http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

23. X Linked Adrenoleukodystrophy Clinical Presentation, Diagnosis Review. X linked adrenoleukodystrophy clinical presentation, diagnosis, and therapy http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

24. Adrenoleukodystrophy; "Lorenzo's Oil" And Teaching The disease portrayed in the movie is called adrenoleukodystrophy (ALD). Clinical and therapeutic aspects of adrenoleukodystrophy and http://carbon.cudenver.edu/~bstith/loren.htm

The use of the movie "Lorenzo's Oil" as a Teaching Tool Bradley J. Stith, Ph.D. Professor , Biology Department, University of Colorado at Denver click here to go back to Dr. Stith's home page This summary is an attempt at explaining the biochemical basis of ALD. In addition, it is an attempt to use the story of the Odone's to inspire students to learn more about cell biology. As today's student is more attuned to visual stimulation and due to the success of case-based learning, I encourage teachers to use the movie "Lorenzo's Oil" (1992, MCA Universal, 2 hrs 18 min; available at video stores or from Critic's Choice at 1800-367-7765 for $20; VHS or DVD) to illustrate many ideas about lipids and principles of cell biology. However, a complete understanding of the movie requires much library research and I provide a summary below. The Disease In the movie, Lorenzo Odone is initially portrayed as a normal, happy, healthy child whose health suddenly declines. Taking place from 1984 to 1987, the parents (Augusto Odone, played by Nick Nolte, and Michaela Odone, played by Susan Sarandon) become involved in a fight to save the life of their son. The Odones train themselves in biology to develop a treatment for their son. The sympathetic portrayal rarely fails to become an indelible memory for my students. In 1996, Phil Collins has recorded a song called "Lorenzo" in his "Dance Into the Light" album. The lyrics were written by Michaela and Lorenzo.

25. Introduction To Leukodystrophy In 1971, Dr. Michael Blaw coined the name adrenoleukodystrophy; The term adrenoleukodystrophy encompasses two distinct genetic disorders; http://www.ulf.org/ulf/intro/

U NITED L EUKODYSTROPHY F OUNDATION 2304 Highland Drive Sycamore, Illinois 60178 Phone: (800) 728-5483 FAX: (815) 895-2432 Introduction to Leukodystrophy 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.

26. Adrenoleukodystrophy And Myelin: Where's The Connection? adrenoleukodystrophy. Also known as ALD. Ten years ago many people would not The first step in understanding adrenoleukodystrophy is to ask what it is http://serendip.brynmawr.edu/bb/neuro/neuro99/web3/Kirbyglatkowski.html

Biology 202 1999 Final Web Reports On Serendip Adrenoleukodystrophy and Myelin: Where's the Connection? Emma Kirby-Glatkowski Adrenoleukodystrophy. Also known as ALD. Ten years ago many people would not be familiar with this extremely rare childhood disease. But now awareness has increased as a result of the 1992 MCA Universal film, "Lorenzo's Oil". This true story movie shows the struggles of a family whose son is dying from this disease and their fight to try to save him and children like him. After seeing this movie myself I became very interested in ALD and the possible ways to cure or treat it. In the last decade there has been some amazing research done in conjunction with this disease and the few others who, like it, occur as a result from the breakdown or loss of myelin in the brain. The first step in understanding adrenoleukodystrophy is to ask what it is and how it works. According to the fact sheet put out by the National Institute of Health in Bethesda, MD in 1997, "ALD is a rare, genetic disorder characterized by the breakdown or loss of the myelin sheath surrounding nerve cells in the brain and progressive dysfunction of the adrenal gland" . This disorder affects fatty acid metabolism which causes the dysfunction of the adrenal glands, the nervous system, and the testes

27. Adrenoleukodystrophy Definition - Medical Dictionary Definitions Of Popular Medi Online Medical Dictionary and glossary with medical definitions. http://www.medterms.com/script/main/art.asp?articlekey=11567

28. Adrenoleukodystrophy (ALD): A Case Study adrenoleukodystrophy (ALD) is a rare inherited metabolic disorder characterized by the For more information on adrenoleukodystrophy, please contact http://www.accessexcellence.org/AE/AEPC/WWC/1994/adreno.html

Using the Film "Lorenzo's Oil" Adrenoleukodystrophy (ALD): A Case Study Using the Film "Lorenzo's Oil" Linda Gostinger 1994 Woodrow Wilson Biology Institute Introduction The purpose of this activity is to expose the students to an inherited genetic disorder by viewing the film "Lorenzo's Oil." The students will be able to learn about this rare disease and follow the progression of the disease from the initial diagnosis through the 32 month ordeal that the family endured. They will experience the frustrations and triumphs with the Odone family as they follow the challenges of finding a cure for ALD. The students will observe the scientific method being put into practice. This is a true-life drama which depicts the social, financial, ethical and political ramifications of a little-known genetic disease that doesn't get much attention from doctors nor the research community. This is an interdisciplinary study that could be used on several levels and with a variety of classes, for example: Biology, Chemistry, Genetics, Ethics, Health, Neurology, Nutrition, Pathology, Psychology and Anatomy. Summary of the Disease Adrenoleukodystrophy (ALD) is a rare inherited metabolic disorder characterized by the loss of the fatty covering (myelin sheath) on nerve fibers within the brain and progressive degeneration of the adrenal gland. The basic defect is the impaired capacity to degrade very long chain fatty acids that are found in the blood plasma and tissues of the body. These fatty acids accumulate in the brain (cerebral white matter) and the adrenal glands.

29. Home Page adrenoleukodystrophy Family Support Trust is a national registered charity, specifically for children like us who are victims of the life threatening http://www.aldfst.org.uk/

WELCOME YOU TO OUR WEB SITE We Had A Dream To be Football Players in the Premier League. To Fly a Plane. To Drive a Train. But all our dreams were over before they began, the only thing we all have in common now is that we have Adrenoleukodystrophy. Adrenoleukodystrophy Family Support Trust is a national registered charity, specifically for children like us who are victims of the life threatening genetic disease called Adrenoleukodystrophy, better known as ALD for short. Please use the following pages and links to find out more about the work of the ALD Family Support Trust, and for information on how you can help us. Thank You So Much. [Home] [Patrons Message] [About Us] [Tigga the Hippo] ... [Useful Links]

30. ALD And Lorenzo's Oil Article describes adrenoleukodystrophy (ALD), its symptoms, diagnosis, and treatment, and the movie Lorenzo s Oil. http://rarediseases.about.com/cs/ald/a/041301.htm

var zLb=8; var zIoa2 = new Array('Elsewhere on the Web','NINDS: Adrenoleukodystrophy','http://www.ninds.nih.gov/health_and_medical/disorders/adrenolu_doc.htm','Write to Lorenzo Odone','http://www.myelin.org/aboutlorenzo.htm'); zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') zfs=0;zCMt='a70' About Rare / Orphan Diseases Information by Disease Type Metabolic Disorders ALD and Lorenzo's Oil Rare Diseases Essentials Rare Diseases: Basic Information Rare Diseases Support Groups ... Help zau(256,140,140,'el','http://z.about.com/0/ip/417/C.htm','');w(xb+xb+' ');zau(256,140,140,'von','http://z.about.com/0/ip/496/6.htm','');w(xb+xb); FREE Newsletter Sign Up Now for the Rare / Orphan Diseases newsletter! See Online Courses Search Rare / Orphan Diseases Stay up to date! Compare Prices Email to a friend ... Print this page Elsewhere on the Web NINDS: Adrenoleukodystrophy Write to Lorenzo Odone Most Popular Muscular Dystrophy ALD and Lorenzo's Oil Progeria Syndromes Leprosy (Hansen's Disease) ... The Elephant Man What's Hot Muscular Dystrophy Autoimmune Kidney Disease Minamata Disease Charcot-Marie-Tooth Disease ... Meckel-Gruber Syndrome adunitCM(150,100,'x55') ALD and Lorenzo's Oil From Mary Kugler Your Guide to Rare / Orphan Diseases FREE Newsletter.

31. Adrenoleukodystrophy (ALD) Links to information and resources for adrenoleukodystrophy (ALD). http://rarediseases.about.com/cs/ald/

zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') zfs=0;zCMt='a70' About Rare / Orphan Diseases Rare Diseases Essentials ... Help zau(256,140,140,'el','http://z.about.com/0/ip/417/C.htm','');w(xb+xb+' ');zau(256,140,140,'von','http://z.about.com/0/ip/496/6.htm','');w(xb+xb); FREE Newsletter Sign Up Now for the Rare / Orphan Diseases newsletter! See Online Courses Search Rare / Orphan Diseases Adrenoleukodystrophy Guide picks An inherited progressive degenerative myelin disorder in which fats are not metabolized properly, leading to permanent nerve and adrenal gland damage. Adrenoleukodystrophy (ALD) and Lorenzo's Oil Article explains the disease, its symptoms, diagnosis, and treatments, and what new therapies are being explored. From the About.com Guide to Rare/Orphan Diseases. Association Europeenne contre les Leucodystrophies Addresses of support groups in France, Switzerland, Belgium, and comprehensive information on the disorder in French. The British Trust for the Myelin Project Facts, research news, support, and links to international support groups. GeneClinics: Adrenoleukodystrophy Comprehensive information on all aspects of adrenoleukodystrophy, including detailed genetic information. Written at a scientific level.

32. ClinicalTrials.gov - Information On Clinical Trials And Human Research Studies: Search results for adrenoleukodystrophy ALLFIELDS are shown below. Trioleate (Lorenzo s Oil) Therapy in Male Children with adrenoleukodystrophy http://www.clinicaltrials.gov/search/term=Adrenoleukodystrophy

Home Search Browse Resources ... About Search results for Adrenoleukodystrophy [ALL-FIELDS] are shown below. Include trials that are no longer recruiting patients. 3 studies were found. Recruiting Study of Glyceryl Trierucate and Glyceryl Trioleate (Lorenzo's Oil) Therapy in Male Children with Adrenoleukodystrophy Condition: Adrenoleukodystrophy Not yet recruiting Study of Bile Acids in Patients With Peroxisomal Disorders Conditions: Infantile Refsum's Disease; Zellweger Syndrome; Bifunctional Enzyme Deficiency; Adrenoleukodystrophy Recruiting Phase II Study of Allogeneic Bone Marrow or Umbilical Cord Blood Transplantation in Patients With Lysosomal or Peroxisomal Inborn Errors of Metabolism Conditions: Graft Versus Host Disease; Lysosomal Storage Diseases; Peroxisomal Disorders U.S. National Library of Medicine Contact NLM Customer Service National Institutes of Health Privacy ... Freedom of Information Act

33. MedFriendly.com: Adrenoleukodystrophy provides an easy to understand definition for the medical term, adrenoleukodystrophy. http://www.medfriendly.com/adrenoleukodystrophy.html

MedFriendly TM TM A B C D ... Z Web MedFriendly.com What is adrenoleukodystrophy? What are the signs and symptoms of adrenoleukodystrophy? Are there different types of adrenoleukodystrophy? What causes adrenoleukodystrophy? ... What is the origin of the term, adrenoleukodystrophy? WHAT IS ADRENOLEUKODYSTROPHY? Adrenoleukodystrophy (abbreviated as ALD) is a rare disorder that is characterized by a buildup of saturated, very long chain fatty acids (abbreviated VLCFA) in the tissues of the body. Saturated means to be filled up with something. In the case of fats, saturated refers to how much hydrogen (a type of element) is contained in it. Saturated fats are filled with hydrogen. Fatty acids are types of chemicals in the body that are necessary for many bodily functions. Very long chain fatty acids are called "very long" because they have greater amounts of carbon in them. Carbon is a type of element that is essential to normal bodily functioning. In ALD, very long chain fatty acids are found in especially high numbers in the brain, blood, and the adrenal cortex (the outer part of the adrenal glands). The adrenal glands are a pair of glands that play an important role in metabolism and help the body respond to physical and emotional stress by releasing certain hormones. A gland is an organ in the body made of special cells that form and release materials such as fluid. Metabolism is the chemical actions in cells that release energy from nutrients or use energy to create other substances. Hormones are natural chemicals produced by the body and released into the blood that have a specific effect on tissues in the body.

34. NORD - National Organization For Rare Disorders, Inc. Childhood adrenoleukodystrophy; Neonatal adrenoleukodystrophy. General Discussion adrenoleukodystrophy is a rare inherited metabolic disorder characterized http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Adrenoleukody

35. What Is Adrenoleukodystrophy? adrenoleukodystrophy (ALD) falls into a group of disorders known as The figure above shows the location of the adrenoleukodystrophy gene on the x http://www.ikm.jmu.edu/Buttsjl/ISAT493/Adrenoleukodystrophy/aldintro.html

Main X-linked page Symptoms Incidence Severity ... "Lorenzo's Oil" Adrenoleukodystrophy (ALD) falls into a group of disorders known as leukodystrophies This disease is diagnosed with a plasma test to determine the level of very long chain fatty acids, regardless of symptomatology. It is a very specialized test, so it is only performed in a few laboratories worldwide. These very long chain fatty acids accumulate, due to absence of peroxisomes in the liver, and damage the ability of the adrenal gland to convert cholesterol to steroid hormones. The characteristic of the disease is progressive cognitive and behavioral impairment. This impairment is due to the myelin degeneration that occurs within these patients' central nervous system. Without the myelin sheath, nerve fibers are damaged and cease to function properly. Click the above graphic to hear the pronunciation of the disease. When prompted, choose 'open from current location.' The figure above shows the location of the Adrenoleukodystrophy gene on the x chromosome. It was borrowed from

36. Treatment Of Adrenoleukodystrophy Treatment of adrenoleukodystrophy that helps to normalize the levels of very long chain fatty acids in boys with adrenoleukodystrophy. http://www.ikm.jmu.edu/Buttsjl/ISAT493/Adrenoleukodystrophy/aldtreatment.html

Treatment of Adrenoleukodystrophy Main X-linked page What is it? Incidence Symptoms ... "Lorenzo's Oil" There are many experimental therapies being used, but no concrete information is available yet about the effectiveness of bone marrow transplants, gene therapy or “Lorenzo’s Oil” combined with a low fat diet. Lorenzo’s Oil is a mixture of oleic and erucic acids, that helps to normalize the levels of very long chain fatty acids in boys with adrenoleukodystrophy. Having low levels of very long chain fatty acids in the body will help to slow and minimize the effects of the disease by preventing them from accumulating in the body. Unfortunately, use of the oil causes gross lowering of platelets in patients. Children with this disorder are deficient in docasahexaenoic acid, and clinical trials are being conducted with administration of this acid derived from algae. The picture above shows the makeup of oleic and erucic acids and how they combine to make "Lorenzo's Oil." It was borrowed from http://carbon.cudenver.edu/~bstith/

37. Default adrenoleukodystrophy by Tom, Bryan, Amy, and Andy. Group 132. adrenoleukodystrophy (ALD) is a complicated sounding word at first glance, but after breaking http://www.gen.umn.edu/faculty_staff/jensen/1135/example_student_projects/Spr200

38. Kennedy Krieger Institute Adrenoleukodystrophy (ALD) adrenoleukodystrophy (ALD) is a rare, genetic disorder characterized by the NALD and Xlinked adrenoleukodystrophy never occur in the same family. http://www.kennedykrieger.org/kki_diag.jsp?pid=1069

39. Dr. Koop - Adrenoleukodystrophy adrenoleukodystrophy describes any of several closely related inheritable disorders of the breakdown () of certain fats (long chain fatty acids). http://www.drkoop.com/ency/93/001182.html

Home Health Reference Adrenoleukodystrophy Jul 29, 2005 Search: Dr.Koop MEDLINE Diseases Symptoms Procedures Natural Medicine ... Drug Library Inside DrKoop News Archive Animations Health Videos Health Tools ... Newsletters Adrenoleukodystrophy Injury Disease Nutrition Poison ... Prevention Adrenoleukodystrophy Definition: Adrenoleukodystrophy describes any of several closely related inheritable disorders of the breakdown ( metabolism ) of certain fats (long chain fatty acids). These disorders affect the adrenal glands , nervous system, and testes Alternative Names: X-linked adrenoleukodystrophy; Melanodermic leukodystrophy; Neonatal adrenoleukodyrstophy; NALD Causes, incidence, and risk factors: Adrenoleukodystrophy is transmitted as an X-linked trait (the neonatal form is by autosomal recessive transmission). It affects approximately 1 in 20,000 to 1 in 50,000 individuals from all races. It results in the accumulation of long chain fatty acids in the nervous system, adrenal gland, and testes, which disrupts normal activity. There are several (seven recognized) different forms of the disease. The neonatal form appears shortly after birth and includes seizures and delayed neurological development with death occurring in infancy or young childhood. The childhood cerebral form appears in mid-childhood (at 4-8 years), and the other forms appear during adolescence. About one-third of affected people develop neurological symptoms and about half develop abnormal adrenal function.

40. Dr. Koop - Neonatal Adrenoleukodystrophy Neonatal adrenoleukodystrophy, Jul 29, 2005. Search, Dr.Koop, MEDLINE Neonatal adrenoleukodystrophy. back. Neonatal adrenoleukodystrophy http://www.drkoop.com/ency/93/ImagePages/17277.html

Home Health Reference Neonatal adrenoleukodystrophy Jul 29, 2005 Search: Dr.Koop MEDLINE Diseases Symptoms Procedures Natural Medicine ... Drug Library Inside DrKoop News Archive Animations Health Videos Health Tools ... Newsletters Neonatal adrenoleukodystrophy NALD is an inheritable disorder that affects the adrenal glands, the white matter of the brain and the testes. Some of the symptoms for this disorder include seizures, hyperactivity, crossed eyes, paralysis, hearing loss, and muscular weakness. New Features Fewer Migraines Skin Cancer Atkins/Low Carb Diets Learn More About Migraines * All Health Centers * Acne Addictions AIDS/HIV Alcohol Abuse Allergies Alternative Medicine Alzheimer's Arthritis Asthma Attention Deficit Disorder (ADHD) Backache Bipolar Affective Disorder Birth Control Blood Blood Pressure Bone/Joint/Tendon Bowel Brain Breast cancer Cancer Cerebral Palsy Cholesterol Cramps Crohn's Disease Cysts Dental/Oral Depression Diabetes Diet, Fitness, Looks Disabled/Special Needs Drug Abuse Ear/Nose/Throat Eating/Appetite Eczema Encephalitis Eye/Vision Fatigue Fever Flu Food Poisoning Foot Gallbladder Gastrointestinal Genetic/Congenital GERD/Heartburn Hair Loss Hair/Scalp Headache Hearing Heart Disease, Stroke

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