81. Health Library Find Information On Adrenoleukodystrophy At Find information on adrenoleukodystrophy at MerckSource. Learn more about adrenoleukodystrophy adrenoleukodystrophy.Definition Any of several closely http://www.mercksource.com/pp/us/cns/cns_hl_adam.jspzQzpgzEzzSzppdocszSzuszSzcns

82. Adrenoleukodystrophy (ALD): A Case Study Using The Film "Lorenzo's Oil" Activities Exchange Woodrow Wilson Collection adrenoleukodystrophy (ALD)A Case Study Using the Film Lorenzo's Oil . Linda Gostinger http://www.reachoutmichigan.org/funexperiments/quick/access/adreno.html

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.

83. Adrenoleukodystrophy Articles, Support Groups, And Resources adrenoleukodystrophy articles, support groups, and resources for patientsfrom Med Help International (www.medhelp.org). adrenoleukodystrophy. http://www.medhelp.org/HealthTopics/Adrenoleukodystrophy.html

[Health Topics A-Z] A B C D ... Z Adrenoleukodystrophy [Med Help Home] [Library Search] [Medical Forums] [Patient Network] Revised: 3/30/2003

84. Adrenoleukodystrophy adrenoleukodystrophy. ALD is the acronym for a rare genetic disease calledadrenoleukodysrophy. Due to its unique pattern of inheritance http://www.stopald.org/ald/whatisald.asp

Home What is ALD The Stop ALD Foundation ... April 24, 2002 : The Stop ALD Foundation Update Make a Donation Mailing list Other Resources Contact Us What is ALD?: Adrenoleukodystrophy Current Therapies Gene Therapy Adrenoleukodystrophy ALD is the acronym for a rare genetic disease called adrenoleukodysrophy. Due to its unique pattern of inheritance, and the fact that any individual may undergo random gene mutations, this horrible disease can make its devastating and often lethal appearance without any warning. ALD does not recognize racial, social, economic, or religious boundaries. It does, however, manifest preferentially in males. It is commonly known, especially to Americans, as the Lorenzo's Oil disease, named after an Oscar nominated 1993 film, starring Susan Sarandon and Nick Nolte, which was based on one family's experience. ALD affects boys and young men. In the childhood presentation, which is observed in 35% of ALD-positive individuals, it is usually diagnosed between the ages of four and ten years old. They generally have a history of learning disabilities and/or a behavior issue such as attention deficit disorder (ADD) or attention deficit hyperactivity disorder (ADHD) while in fact, insulating material in the boys' brains, the white matter (also known as myelin) is progressively being destroyed. The disease worsens over several years, and usually in less than two years from ALD diagnosis, the child will lose all cognitive, mental, and physical functions, and deteriorate into a vegetative state leading to death.

85. Adrenoleukodystrophy adrenoleukodystrophy. Definition Alternative Names Xlinked adrenoleukodystrophy;Melanodermic leukodystrophy; Neonatal adrenoleukodyrstophy; NALD. http://www.northarundel.com/ency/article/001182.htm

Disease Nutrition Surgery Symptoms Injury ... Encyclopedia (English) Toggle English Spanish Adrenoleukodystrophy Overview Symptoms Treatment Prevention Definition: Adrenoleukodystrophy describes any of several closely related inheritable disorders of the breakdown ( metabolism ) of certain fats (long chain fatty acid) that affects 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). Its incidence is estimated at 1 out of 20,000 to 1 in 50,000 and affects all races. The metabolic defect is the accumulation of long chain fatty acids in the nervous system, adrenal gland, and testes , where the accumulated material 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 (around 4-8 years) appears in mid-childhood, and the other forms appear during adolescence . About 33% of affected people develop neurological symptoms and about 50% develop abnormal adrenal function. In the childhood form, early symptoms include

86. Help With ALD (adrenoleukodystrophy) What is ALD? adrenoleukodystrophy (ALD) is a rare, genetic diseasefor which there is no effective treatment or cure. It is best http://www.run4ald.org/

contact the chairman Race Details Registration Form Directions ... Photos What is ALD? Adrenoleukodystrophy (ALD) is a rare, genetic disease for which there is no effective treatment or cure. It is best known as the disease portrayed in the 1993 movie "Lorenzos Oil" starring Nick Nolte and Susan Sarandon. ALD manifests primarily in males, and often progresses rapidly boys and young men who are affected typically lose all cognitive and physical functions, and deteriorate into a vegetative state leading to death in two to three years. Who Will this Event Benefit? All of the proceeds of the Run For ALD will benefit the Kennedy Krieger Institute , a non-profit hospital dedicated to treating, preventing and ultimately curing ALD and other neurogenetic diseases. Home Directions Get Involved About ALD 2002 The run4ald.org© and jollybelly.com

87. Help With ALD (adrenoleukodystrophy) are currently under investigation. Additional information regardingadrenoleukodystrophy is available on the following web sites http://www.run4ald.org/about.html

contact the chairman Race Details Registration Form Directions ... Photos Adrenoleukodystrophy (ALD) is a rare genetic disease for which there is no effective treatment or cure. It affects both the adrenal gland and the white matter of the nervous system. ALD is found in many races and ethnic groups around the world. Because it is an X-linked disorder, ALD manifests primarily in males and is transmitted by female carriers (who may also develop mild neurological symptoms later in life). If a female carrier has a child, she has a 25% chance of having an affected male; a 25% chance of having a female carrier, and a 50% chance of having a normal boy or girl. In the childhood version of ALD, which is observed in approximately 35% of males with the ALD gene, the onset of symptoms usually occurs between the ages of 4 and 10 years. Early warning signs include learning disabilities and symptoms of attention deficit disorder. As the myelin in the brain continues to deteriorate, these boys may also develop vision and hearing loss, impaired coordination, personality changes, seizures and dementia. Usually, in two to three years from diagnosis, these children lose all of their cognitive and physical functions, and lapse into a vegetative state leading to death. In the more common, adult-onset version of the disease, known as adrenomyeloneuropathy (AMN), men in their twenties and thirties begin to experience difficulty walking, as well as bladder and bowel disturbances. These neurological problems usually progress over several decades. Approximately 40 to 50% of these men eventually develop demyelination of the white matter of the brain, in which case they undergo the same physical and mental deterioration as ALD boys, also declining to a vegetative state within two to three years.

88. Adrenoleukodystrophy The Official Parent's Sourcebook on adrenoleukodystrophy (Addison Disease withCerebral Sclerosis; AddisonSchilder Disease; Adrenomyeloneuropathy; Bronze http://www.icongrouponline.com/health/Adrenoleukodystrophy.html

ICON Health Publications Official Health Sourcebooks The Official Parent's Sourcebook on ADRENOLEUKODYSTROPHY (Addison Disease with Cerebral Sclerosis; Addison-Schilder Disease; Adrenomyeloneuropathy; Bronze Schilder's Disease; diffuse cerebral sclerosis with adrenocortical atrophy; Encephalitis Periaxialis Diffusa; Flatau-Schilder Disease; Melanodermic Leukodystrophy; Myelinoclastic Diffuse Sclerosis; Neonatal adrenoleukodyrstophy; Schilder Disease; Schilder Encephalitis; Sex-linked metachromatic leukodystrophy; Siemerling-Creutzfeldt disease; Siewerling-Creutzfeldt Disease; sudanophilic leukodystrophy with adrenal atrophy; Sudanophilic Leukodystrophy, ADL; X-linked adrenoleukodystrophy) Revised and Updated for the Internet Age Paperback Book Order by phone: 800-843-2665 (within USA) 1-201-272-3651 (from outside USA) Electronic File * E-Book version sent via e-mail in 2 business days Electronic File * E-Book version sent via e-mail in 2 business days Pages Price $28.95(USD) ISBN Published Synopsis A comprehensive manual for anyone interested in self-directed research on Adrenoleukodystrophy. Fully referenced with ample Internet listings and glossary. Related Conditions/Synonyms Addison Disease with Cerebral Sclerosis; Addison-Schilder Disease; Adrenomyeloneuropathy; Bronze Schilder's Disease; diffuse cerebral sclerosis with adrenocortical atrophy; Encephalitis Periaxialis Diffusa; Flatau-Schilder Disease; Melanodermic Leukodystrophy; Myelinoclastic Diffuse Sclerosis; Neonatal adrenoleukodyrstophy; Schilder Disease; Schilder Encephalitis; Sex-linked metachromatic leukodystrophy; Siemerling-Creutzfeldt disease; Siewerling-Creutzfeldt Disease; sudanophilic leukodystrophy with adrenal atrophy; Sudanophilic Leukodystrophy, ADL; X-linked adrenoleukodystrophy

89. Arch Neurol -- Page Not Found 56;273275, March 1999, Mutational Analysis and the Pathogenesis of Variant X-linkedadrenoleukodystrophy Phenotypes, Hugo W. Moser, MD; Stephan Kemp; Kirby D http://archneur.ama-assn.org/issues/v56n3/ffull/ned7968.html

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90. NINDS : Adrenoleukodystrophy Information Page Back to whats new page. NINDS adrenoleukodystrophy informationpage, This Web resource on adrenoleukodystrophy (a rare genetic http://omni.ac.uk/whatsnew/detail/17026795.html

Back to whats new page. NINDS : adrenoleukodystrophy information page This Web resource on adrenoleukodystrophy (a rare genetic disorder) is produced by the National Institute of Neurological Disorders and Stroke (NINDS). A description of adrenoleukodystrophy is provided, and available treatments, prognosis, and current research activities are all discussed. Links to related organisations are provided. This resource has a US focus. Adrenoleukodystrophy / genetics Patient Education Handout [Publication Type] Last modified 28/Feb/2003 [Low Graphics]

91. Adrenoleukodystrophy! adrenoleukodystrophy! This article submitted by on 2/18/99. Email Address My friendsson is 5 years old and has just been diagnosed with adrenoleukodystrophy! http://neuro-www.mgh.harvard.edu/forum/LeukodystrophyF/2.18.9911.52PMAdrenoleuko

Adrenoleukodystrophy! This article submitted by on 2/18/99. Email Address: My friends son is 5 years old and has just been diagnosed with Adrenoleukodystrophy! I saw the movie Lorenzo's Oil. I can't believe that my friends son Daniel will be like that. I don't know a lot about this disease. Do all kids with ALD die? When? Please respond Next Article Previous Article Return to Neurological Disorder Topic Menu Here is a list of responses that have been posted regarding this article... my nephews have ald (11/2/99) 10:24 PM Hope for ALD (3/18/99) 7:22 PM Another URL that may help. (2/19/99) 4:49 PM Info. and Links (2/19/99) 4:45 PM ... PLEASE HELP!!!!!!!!!!!!!!!!!!!!! (2/19/99) 2:04 PM If you want to post a completely new article on any topic you like, click here. If you would like to post a direct response to this article, fill out this form completely... Response Title: Name: Email: Remember that your Name and Email Address are optional...you don't have to enter them! You can remain completely anonymous if you like by leaving these fields empty. Response Text: Click HERE to return to the main Neurology WebForum Homepage.

92. Leucodistrofie/ADRENOLEUKODYSTROPHY c) Parametri clinici e storiografia terapeutica delle leucodistrofiei) ADRENOLEUCODISTROFIA (adrenoleukodystrophy). DEFINITION http://www.peacelink.it/appeal/gianmarco/i.html

c) Parametri clinici e storiografia terapeutica delle leucodistrofie i) ADRENOLEUCODISTROFIA (ADRENOLEUKODYSTROPHY) DEFINITION: A disorder of peroxisomes transmitted as a X-linked trait characterized by the accumulationof saturated very long chain fatty acids (VLCFA) resulting in the progressive dysfunction of CNS white matter and the adrenal cortex. EPIDEMIOLOGY: incidence: 1/100,000 age of onset: 4 to 8 years of age risk factors: familial - x-linked recessive chrom. #: Xq28 (terminal segment) gene: ? lignoceroyl-CoA ligase (peroxisomal enzyme) PATHOGENESIS/PATHOLOGY: CLINICAL FEATURES: INVESTIGATIONS: MANAGEMENT:

93. Nature Publishing Group Short report. Exon organisation of the mouse gene encoding the adrenoleukodystrophyrelated protein (ALDRP). Cyril Broccardo 1 , Nathalie http://www.nature.com/cgi-taf/DynaPage.taf?file=/ejhg/journal/v6/n6/abs/5200233a

94. Adrenoleukodystrophy Resource Updates adrenoleukodystrophy resources. Cytogenetic studies should be performed inall severely symptomatic Xlinked adrenoleukodystrophy heterozygotes. http://www.health.xq23.com/inst/Research_Updates/Adrenoleukodystrophy.html

Adrenoleukodystrophy resources. Information for medical researchers, health professionals, bioscientists, and policy makers. Recommended References. [see index for total category] KEY ABSTRACTS: PUBMED Citations: Innovations and emerging technologies in Adrenoleukodystrophy, Patent List (when available) for Adrenoleukodystrophy: 6,465,230: 27411, a novel human PGP synthase 6,458,838: Adrenoleukodystrophy treatments 6,458,576: 22406, a novel human pyridoxal-phosphate dependent enzyme family member and uses therefor 6,455,553: Method for treating a demyelinating condition 6,451,994: 23413, a novel human ubiquitin protease 6,444,802: Human aminopeptidase 6,433,145: Keratinocyte derived interferon 6,432,992: Use of riluzole or its salts for the prevention and treatment of adrenoleukodystrophy 6,420,153: 18232, a novel dual specificity phosphatase and uses therefor 6,413,757: 25312, a novel human agmatinase-like homolog 6,403,646: Method for the treatment of alpha-1-antitrypsin deficiency and related pathologies 6,403,358: 21529, a novel adenylate cyclase

95. Electron Microscopy Adrenoleokodystrophy, adrenal gland, with long parallel inclusionsof long chain fatty acids, electron micrograph. http://medlib.med.utah.edu/WebPath/HISTHTML/EM/EM010.html

Adrenoleokodystrophy, adrenal gland, with long parallel inclusions of long chain fatty acids, electron micrograph.

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