41. Mississippi River Challenge For Rett Syndrome And Leukodystrophy, Beginning May Rett Syndrome leukodystrophy May 10, 2003 6 AM to May 28, 1051 AM 2003- A 2348 Mile Marathon to Support a Marathon of Research! http://www.mississippichallenge.org/

2003 World Record Set: 18 days, 4 hours, 51 minutes! The Mississippi River Challenge for - May 10, 2003 6 AM to May 28, 10:51 AM 2003- A 2,348 Mile Marathon to Support a Marathon of Research! Please see Justin Bradford's Website and sign his guestbook - he loves to hear from everyone (Justin is Bob Bradford's grandson)! Home Team Mission Route Map ... Contact Us 5/10/03 - Bob and Clark paddle off in a Kruger Canoe, as Verlen Kruger watches 5/13/03, photo by Pete Colas, who paddled with Bob and Clark 5/28/03, at mile marker 0, South of New Orleans The Mississippi River Challenge for Rett Syndrome And Leukodystrophy was an ultra-endurance race of the ENTIRE Mississippi River (2,348 miles) without any timeouts or breaks, all done to benefit those suffering from two life threatening diseases - Rett Syndrome and all forms of Leukodystrophy. On May 10, 2003, Clark Eid (Cheshire, CT) and Bob Bradford (Lapeer, MI) began their race against the clock to paddle the mighty Mississippi River in World Record Time in a specially designed Kruger racing canoe. They launched their boat and their epic adventure in the still waters of a northern Minnesotan lake and emerged ten states later on Wednesday, May 28, at 10:51 AM, shattering the previous records set in 1984 and 1989 by over 5 days!

42. 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 leukodystrophies. Includes disease information, family registry, and other resources. http://www.huntershope.org/

About Us Krabbe Disease Research Families ... Links Established in 1997 by Pro Football Hall of Fame member and former Buffalo Bills Quarterback, Jim Kelly, and his wife, Jill, after their infant son, Hunter, was diagnosed with Krabbe Leukodystrophy, an inherited, fatal, nervous system disease. The Foundation is the Kelly's life long commitment to increase public awareness of leukodystrophies as well as to increase the likelihood of early detection and treatment. Their ultimate goal is to raise money to fund research efforts to identify new treatments, therapies, and a cure for Krabbe and other leukodystrophies. In The News! Research partly funded by Hunter's Hope is published in the New England Journal of Medicine! Transplantation of Umbilical-Cord Blood in Babies with Infantile Krabbe's Disease makes headlines around the nation! Newborn Screening Get your Hunter's Hope UNBS Bracelet Today! Next Upcoming Event: Hunter's Hope Family Fun Run September 24, Orchard Park, NY info@huntershope.org Site design and implementation by Algonquin Studios

43. ► Metachromatic Leukodystrophy A medical encycopedia article on the topic Metachromatic leukodystrophy. http://www.umm.edu/ency/article/001205.htm

var MenuLinkedBy='AllWebMenus [2]', awmBN='530'; awmAltUrl=''; Disease Nutrition Surgery Symptoms Injury ... Encyclopedia (English) Toggle English Spanish Metachromatic leukodystrophy Overview Symptoms Treatment Prevention Definition: Metachromatic leukodystrophy is an inherited metabolic storage disease characterized by the absence of the enzyme arylsulfatase A and increased storage of sulfatide. Alternative Names: MLD; Arylsulfatase A deficiency Causes, incidence, and risk factors: Metachromatic leukodystrophy (MLD) is transmitted as an autosomal recessive trait. MLD has a wide range of symptoms. As with many other storage diseases, there are forms of early and delayed onset (late infant, juvenile and adult types). The most common (and the most severe form) is the late infant onset form, which has symptoms such as irritability decreased muscle tone muscle wasting , the loss of the ability to walk. Debility is progressive with blindness seizures , and partial paralysis . Death occurs usually before age 10. Both the juvenile and adult forms have later onset but similar symptoms. In the adult and juvenile forms

44. Leukodystrophy United leukodystrophy Foundation UNITED leukodystrophy FOUNDATION 2304 leukodystrophy - CHORUS document on the different types of leukodystrophy. http://www.health-nexus.com/leukodystrophy1.htm

The #1 Health information site Health-Nexus.Net Health-Nexus.Org Home ... Up Search Health-Nexus for: Match ALL words Match ANY word Email this page to a friend ! Post a question or comment on our Message Board Home Page Health Specialties Health News ... Alternative Health Options Substance Abuse Animal Health Search: Books Magazines Video Keywords: Find it Here Leukodystrophy The Family Village / Library / Leukodystrophy - Types of Leukodystophy: Adrenoleukodystrophy, Alexander Disease, Canavan Disease, Krabbes Disease, Metachromatic Leukodystrophy, and Refsum's Disease. United Leukodystrophy Foundation - UNITED LEUKODYSTROPHY FOUNDATION 2304 Highland Drive * Sycamore, Illinois USA 60178 * Phone: (800) 728-5483 * FAX: (815) 895-2432 The United Leukodystrophy Foundation (ULF), incorporated in 1982, is a nonprofit, voluntary health organization. Leukodystrophy - CHORUS document on the different types of Leukodystrophy. Metachromatic Leukodystrophy (MLD) - The Metachromatic Leukodystrophy (MLD) Page.

45. Leukodystrophy Family ALDAdreloleukodystrophy AMN-Adrenomyeloneuropathy and the undiagnosed. friendship, support and family. http://groups.msn.com/leukodystrophyfamily

var nEditorialCatId = 102; MSN Home My MSN Hotmail Shopping ... Money Web Search: document.write(' Groups Groups Home My Groups Language ... Help leukodystrophy family leukodystrophyfamily@groups.msn.com What's New Join Now ALD/AMN Family Contact List Calendar ... Recommend This Group to a Friend Welcome, to our L eukodystrophy Family ! All together now! James, Sarah, Amy, Caroline, Charla, Paul and Lori The ladies are here too. Janis, Jamie, Sarah and Caroline Dr's Hugo and Ann Moser. James and Dan. Too much fun! Please, add photos, stories, links and interesting things. Thanks!!! Add a Page New Messages View all Stem Cell Transplants My daughter received a stem cell transplant for Krabbe at Duke University. Dr. Joanne Kurtzberg was her doctor. If you would like to talk with her please let me know. I will forward you her conta... AshesMum Mustrd Oil approximately 1cc per kilo of weight. # LBS divided by 2.2 = Kilograms 1cc per kilo of weight. 120 lbs divided by 2.2 = 54.4 so 50-60 cc twice daily (after meals)... chatsworthlakegirl Mustrd Oil BrandoBaiBritt Mustrd Oil The benefit behind the mustard oil is that it brings the VLCFA's to normal limits as the Lorenzo's Oil does. Benefits : Nornalizing the VLCFA's, exte...

46. ClinicalTrials.gov - Information On Clinical Trials And Human Research Studies: Search results for leukodystrophy ALLFIELDS are shown below. Include trials that are no longer recruiting patients. 5 studies were found. http://www.clinicaltrials.gov/search/term=Leukodystrophy

Home Search Browse Resources ... About Search results for Leukodystrophy [ALL-FIELDS] are shown below. Include trials that are no longer recruiting patients. 5 studies were found. Recruiting The Classification and Cause of Leukodystrophies of Unknown Cause Condition: Lysosomal Storage Disease 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 Recruiting Magnetic Stimulation of the Human Nervous System Conditions: Demyelinating Disease; Healthy; Lysosomal Storage Disease; Motor Neuron Disease; Movement Disorder Recruiting Study of Tongue Pressures Conditions: Deglutition Disorder; Healthy Recruiting Cause and Pathogenesis of Neurometabolic Disorders Condition: Neurodegenerative Disease U.S. National Library of Medicine Contact NLM Customer Service National Institutes of Health Privacy ... Freedom of Information Act

47. ClinicalTrials.gov - Information On Clinical Trials And Human Research Studies: Search results for Metachromatic leukodystrophy ALLFIELDS are shown below. Include trials that are no longer recruiting patients. 1 study was found. http://www.clinicaltrials.gov/search/term=Metachromatic Leukodystrophy

Home Search Browse Resources ... About Search results for Metachromatic Leukodystrophy [ALL-FIELDS] are shown below. Include trials that are no longer recruiting patients. 1 study was found. 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

48. OMIM - METACHROMATIC LEUKODYSTROPHY http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=250100

49. Entrez PubMed Correction of metachromatic leukodystrophy in the mouse model by transplantation of genetically modified hematopoietic stem cells. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1

50. Virtual Hospital: Radiology Resident Case Of The Week: Adrenal Leukodystrophy (A Adrenal leukodystrophy can be subdivided into classic Xlinked ALD and infantile ALD. Adrenal leukodystrophy (ALD) icon gif 1 Image 1 http://www.vh.org/pediatric/provider/radiology/PedRadSecTF/012696/

Radiology Resident Case of the Week: January 26, 1996 Adrenal Leukodystrophy (ALD) Mike Rubin, M.D. Peer Review Status: Internally Peer Reviewed Clinical Sx: The disease usually presents in males age 5-10 years old with a gradual disturbance in gait and slight intellectual impairment. There is usually rapid progression with hypotension, seizures, visual complaints, and difficulty in swallowing appearing with time. Abnormal skin pigmentation or other signs and symptoms of adrenal insufficiency may become apparent before CNS symptoms. In some cases, adrenal symptoms never appear. Etiology/Pathophysiology: Classic ALD and the adult variant adrenomyeloneuropathy (AMN) are X-linked diseases in which there is deficiency of lignoceroyl-CoA ligase, a perioxisomal enxyme needed for the degradation of very long chain fatty acids (VLCFA). Pathology: White matter diseases are usually classified as demyelinating or dysmyelinating diseases. Dysmyelinating diseases such as ALD are inherited enzymatic deficiencies that cause abnormal formation or increased breakdown of myelin. Demyelinating diseases result in the loss of normally formed myelin by processes such as infection, chemotherapy, radiation, and autoimmune disorders such as multiple sclerosis. The diagnosis of ALD is made by the assay of plasma, red cells, or cultured fibroblasts for increased amounts of VLCFA.

51. Dr. Koop - Metachromatic Leukodystrophy Metachromatic leukodystrophy is an inherited disease characterized by the absence of Metachromatic leukodystrophy (MLD) is transmitted as an autosomal http://www.drkoop.com/ency/93/001205.html

Home Health Reference Metachromatic leukodystrophy Jul 29, 2005 Search: Dr.Koop MEDLINE Diseases Symptoms Procedures Natural Medicine ... Drug Library Inside DrKoop News Archive Animations Health Videos Health Tools ... Newsletters Metachromatic leukodystrophy Injury Disease Nutrition Poison ... Prevention Metachromatic leukodystrophy Definition: Metachromatic leukodystrophy is an inherited disease characterized by the absence of the enzyme arylsulfatase A, which causes a material called cerebroside sulfate to accumulate in cells. This is toxic to the cell, especially neurons (the cells of the nervous system) and causes the problems of the disease. MLD is a member of a class of diseases called lysosomal storage disorders. In these diseases, patients lack a protein needed to metabolize the food we eat. Alternative Names: MLD; Arylsulfatase A deficiency Causes, incidence, and risk factors: Metachromatic leukodystrophy (MLD) is transmitted as an autosomal recessive trait, which means that a person must inherit the defective gene from both parents to be affected. MLD has a wide range of symptoms. As with many other storage diseases, there are forms of early and delayed onset (late infant, juvenile, and adult types).

52. Partners Leukodystrophy Service At MGH leukodystrophy categories Contact us Links. leukodystrophy categories. Radiological Classification (Neonatal) Adrenoleukodystrophy and http://fisher.mgh.harvard.edu/leuko/cat.html

Home Staff Services Leukodystrophy categories Contact us Links Leukodystrophy categories: Radiological Classification (Neonatal) Adrenoleukodystrophy and (Pseudoneonatal) Adrenoleukodystrophy Metachromatic leukodystrophy Globoid cell leukodystrophy (Krabbe disease) ... Peroxisomal Biogenesis Disorders [PBD] (Zellweger-Neonatal ALD-Infantile Refsum-Rhizomelic Chondrodysplasia punctata) Leukodystrophy Service, Massachusetts General Hospital #3125, Building 114, 16th Street Charlestown, MA 02129 USA Tel: (617) 726-5750 Fax: (617) 726-8543 Directions to MGH

53. Partners Leukodystrophy Service At MGH seen on a CT scan or MRI are either permanent or caused by leukodystrophy. or adult has a leukodystrophy until the history and physical examination http://fisher.mgh.harvard.edu/leuko/

Leukoencephalopathies are white matter disorders presumed to occur secondary to other pathogenetic processes and lacking the genetic, progressive and predominantly white matter characteristics of the leukodystrophies. E.g.: Sub-cortical arteriosclerotic leukoencephalopathy (Binswanger's disease). CADASIL. Reversible leukoencephalopathy. Hypertensive Chemotherapy Heroin/ Solventexposure (Kornfeld, Moser et al. 1994) Perinatal telencephalic leukoencephalopathy. Hypoxic ischemic leukoencephalopathy. Leukodystrophies are progressive disorders in which genetically determined molecular defects of myelin sheaths or myelinating cells result in destruction or developmental failure of central nervous white matter. The Leukodystrophies are a heterogeneous group of brain disorders in which brain and sometimes-peripheral nerve myelin is abnormally produced or destroyed. Most of the diseases are genetically determined. The disease and its clinical subtype determine symptoms and outcome. Prognosis may or may not be affected by the genetic abnormality. Staff Frequently Asked Questions Services Leukodystrophy categories ... Links Leukodystrophy Service

54. Metachromatic Leukodystrophy Metachromatic leukodystrophy is a genetic disorder caused by a deficiency of the enzyme arylsulfatase A. http://healthlink.mcw.edu/article/921440824.html

Search Articles: search tips Please Take the HealthLink Survey Email this article Print this article Find related articles: By topic: Neurology By keywords: Receive Health Link via email! Subscribe now >> Metachromatic Leukodystrophy Metachromatic leukodystrophy (MLD) is a genetic disorder caused by a deficiency of the enzyme arylsulfatase A. It is one of a group of genetic disorders called the leukodystrophies that affect growth of the myelin sheath, the fatty coveringwhich acts as an insulatoron nerve fibers in the brain. There are three forms of MLD: late infantile, juvenile, and adult. In the late infantile form, which is the most common, onset of symptoms begins between ages 6 months and 2 years. The infant is usually normal at birth, but eventually loses previously gained abilities. Symptoms include hypotonia (low muscle tone), speech abnormalities, loss of mental abilities, blindness, rigidity (uncontrolled muscle tightness), convulsions, impaired swallowing, paralysis, and dementia. Symptoms of the juvenile form begin between ages 4 and 14, and include impaired school performance, mental deterioration, ataxia, seizures, and dementia.

55. Leukodystrophy leukodystrophy refers to a group of genetic disorders that are characterized by the imperfect growth or development of the white matter or myelin sheath http://healthlink.mcw.edu/article/921774741.html

Search Articles: search tips Please Take the HealthLink Survey Email this article Print this article Find related articles: By topic: By keywords: Receive Health Link via email! Subscribe now >> Leukodystrophy Leukodystrophy, also called "the leukodystrophies," refers to a group of genetic disorders that are characterized by the imperfect growth or development of the white matter or myelin sheath covering nerve fibers in the brain. The myelin sheath is an extremely complex fatty substance made of many components. Each of the leukodystrophies affects one of these components. Specific leukodystrophies include metachromatic leukodystrophy, Krabbe leukodystrophy, adrenoleukodystrophy, Pelizaeus-Merzbacher disease, Canavan disease, Alexander disease, Zellweger syndrome, Refsum disease, and cerebrotendinous xanthomatosis. Scientists say there may be other leukodystrophies that have not yet been identified. The most common signs seen in most leukodystrophies include gradual changes in an infant or child who previously appeared well. Changes may appear in body tone, movements, gait, speech, ability to eat, vision, hearing, behavior, memory, or thought processes. The symptoms, which vary according to the specific type of leukodystrophy, may be difficult to recognize in the early stages of the disease. Treatment of the leukodystrophies is symptomatic and supportive, and may include medications, physical, occupational and speech therapies, and nutritional, educational, and recreational programs.

56. Treatment Of Metachromatic Leukodystrophy At Mayo Clinic Read more about diagnosis of metachromatic leukodystrophy. Treatment Options. Treatment options for metachromatic leukodystrophy are very limited. http://www.mayoclinic.org/metachromatic-leukodystrophy/

Home About Mayo Clinic Jobs Contact Us Mayo Clinic Locations: Arizona Florida Minnesota Mayo Clinic ... Medical Services Metachromatic Leukodystrophy Metachromatic Leukodystrophy Overview Diagnosis Treatment Options Appointments ... Medical Services Treatment of Metachromatic Leukodystrophy at Mayo Clinic (Synonyms: arylsulfatase A deficiency, white matter diseases) Metachromatic leukodystrophy (MLD) is a genetically inherited disorder, passed on from parents to their biological child, in which the brain and nervous system progressively deteriorate, the person loses brain and body functions and eventually dies. Mayo Clinic has experience in diagnosing and caring for patients with MLD, treating more than 150 such patients each year (the vast majority in Rochester). Treatment programs are tailored to each individual and take into account the needs of the patient and family, while providing state-of-the-art care and access to new developments and appropriate clinical trials. Diagnosis The patient will first have a complete physical examination, along with a detailed history of symptoms and family inherited disorders, including metachromatic leukodystrophy. Various tests may be required to aid in an accurate diagnosis. Read more about diagnosis of metachromatic leukodystrophy Treatment Options Treatment options for metachromatic leukodystrophy are very limited. Bone marrow transplantation, when performed early in the course of the disease, has been used effectively on appropriate patients, but also poses some risk. Gene therapy research may eventually lead to a cure or treatment to slow the progression of MLD disease. Genetic testing and genetic counseling are strongly recommended for adults with a family history of MLD. Read more about

57. AllRefer Health - Metachromatic Leukodystrophy (Arylsulfatase A Deficiency, MLD) Metachromatic leukodystrophy (Arylsulfatase A Deficiency, MLD) information center covers causes, prevention, symptoms, diagnosis, treatment, incidence, http://health.allrefer.com/health/metachromatic-leukodystrophy-info.html

AllRefer Channels :: Yellow Pages Reference Health Home ... Contact Us Quick Jump ADD/ADHD Allergies Alzheimer's Disease Arthritis Asthma Back Pain Breast Cancer Cancer Colon Cancer Depression Diabetes Gallbladder Disease Heart Attack Hepatitis High Cholesterol HIV/AIDS Hypertension Lung Cancer Menopause Migraines/Headaches Osteoporosis Pneumonia Prostate Cancer SARS Stroke Urinary Tract Infection 1600+ More Conditions Alternative Medicine Health News Symptoms Guide Special Topics ... Medical Encyclopedia Web health.allrefer.com You are here : AllRefer.com Health Metachromatic Leukodystrophy Metachromatic Leukodystrophy Definition Prevention Treatment Expectations or Prognosis ... Go To Main Page Alternate Names : Arylsulfatase A Deficiency, MLD Definition Metachromatic leukodystrophy is an inherited disease characterized by the absence of the enzyme arylsulfatase A, which causes a material called cerebroside sulfate to accumulate in cells. This is toxic to the cell, especially neurons (the cells of the nervous system) and causes the problems of the disease. MLD is a member of a class of diseases called lysosomal storage disorders. In these diseases, patients lack a protein needed to metabolize the food we eat.

58. AllRefer Health - Adrenoleukodystrophy (Melanodermic Leukodystrophy, NALD, Neona Adrenoleukodystrophy (Melanodermic leukodystrophy, NALD, Neonatal Adrenoleukodyrstophy, XLinked Adrenoleukodystrophy) information center covers causes, http://health.allrefer.com/health/adrenoleukodystrophy-info.html

AllRefer Channels :: Yellow Pages Reference Health Home ... Contact Us Quick Jump ADD/ADHD Allergies Alzheimer's Disease Arthritis Asthma Back Pain Breast Cancer Cancer Colon Cancer Depression Diabetes Gallbladder Disease Heart Attack Hepatitis High Cholesterol HIV/AIDS Hypertension Lung Cancer Menopause Migraines/Headaches Osteoporosis Pneumonia Prostate Cancer SARS Stroke Urinary Tract Infection 1600+ More Conditions Alternative Medicine Health News Symptoms Guide Special Topics ... Medical Encyclopedia Web health.allrefer.com You are here : AllRefer.com Health Adrenoleukodystrophy Adrenoleukodystrophy Definition Prevention Treatment Expectations or Prognosis ... Go To Main Page Alternate Names : Melanodermic Leukodystrophy, NALD, Neonatal Adrenoleukodyrstophy, X-Linked Adrenoleukodystrophy 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 Neonatal Adrenoleukodystrophy Adrenoleukodystrophy is transmitted as an X-linked trait (the neonatal form is by autosomal recessive transmission). Its

59. Globoid Cell Leukodystrophy In globoid cell leukodystrophy (GCL), the lack of the enzyme ßgalactocerebrosidase results in What breeds are affected by globoid cell leukodystrophy? http://www.upei.ca/~cidd/Diseases/nervous system disorders/globoid cell leukodys

related terms: Krabbe's disease, galactocerebrosidosis What is globoid cell leukodystrophy? This is a storage disease, one of a relatively rare group of disorders in which there is a deficiency of a particular enzyme necessary for normal metabolic processes within the body. The result is an accumulation in cells ("storage") of whatever product the enzyme normally acts upon. Typically, animals with a storage disease are normal at birth, fail to grow as rapidly as littermates, and at a consistent age, develop progressive signs of a disorder of the nervous system which will ultimately be fatal. In globoid cell leukodystrophy (GCL), the lack of the enzyme ß-galactocerebrosidase results in an accumulation of galactocerebroside, a component of myelin. This disrupts the cells that normally produce myelin, a fatty substance that coats nerve cells, serves as an electrical insulator and is crucial to the normal conduction of nerve impulses. The progressive loss of myelin in the white matter tracts of the nervous system (brain, spinal cord and/or peripheral nerves) causes a variety of clinical signs such as lack of coordination, tremors, and weakness. Krabbe's disease is a similar condition in people.

60. Leukodystrophy United leukodystrophy Foundation The ULF is a nonprofit, voluntary health Metachromatic leukodystrophy (MLD) Infomration from the Duke University for http://www.reference.com/Dir/Health/Conditions_and_Diseases/L/Leukodystrophy/

Dictionary Thesaurus Encyclopedia Web Home Premium: Sign up Login YOUR AD HERE Dictionary ... Encyclopedia - Web Directory Web Directory Top Health Conditions and Diseases L / Leukodystrophy Krabbe Disease Canavan Research Fund The Canavan Research Fund is a not-for-profit organization dedicated to pioneering research that can treat and eventually cure Canavan and other genetic brain diseases. United Leukodystrophy Foundation The ULF is a nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness and acting as an information source for health care providers; and promoting and supporting research into causes, treatments, and prevention of the leukodystrophies. leukodystrophy CHORUS document on the different types of Leukodystrophy. A little technical. www.canavanfoundation.org A not-for-profit foundation providing information about Canavan disease, prenatal screening, suport, and reasearch. drkoop.com - Adrenoleukodystrophy

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