21. Australian Leukodystrophy Support Group Inc http://www.alds.org.au/

22. NINDS Forwarding Page A short information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/health_and_medical/disorders/leukodys_doc.htm

NINDS has redesigned its website and the URL for the page you were seeking has changed. The new URL for this page is /disorders/leukodystrophy/leukodystrophy.htm . Please update your bookmark to this page. You will be automatically taken to this page in 5 seconds, or you can click the link to go there now.

23. The Myelin Project Home The Myelin Project works to accelerate research on myelin repair. Myelin is damaged by multiple sclerosis, leukodystrophy and the many other http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

24. EMedicine - Metachromatic Leukodystrophy : Article By Theodore Moore, MD Metachromatic leukodystrophy Metachromatic leukodystrophy (MLD) is part of a larger group of lysosomal storage diseases, some of which are progressive, http://www.emedicine.com/ped/topic2893.htm

(advertisement) Home Specialties Resource Centers CME ... Patient Education Articles Images CME Advanced Search Consumer Health Link to this site Back to: eMedicine Specialties Pediatrics Genetics And Metabolic Disease Metachromatic Leukodystrophy Last Updated: May 26, 2004 Rate this Article Email to a Colleague Synonyms and related keywords: arylsulfatase A deficiency, MLD, neurodegenerative disorders, cerebroside sulfatide, galactosyl sulfatide, bone marrow transplantation, sulfatide sulfatase deficiency, sulfatide accumulation AUTHOR INFORMATION Section 1 of 10 Author Information Introduction Clinical Differentials ... Bibliography Author: Theodore Moore, MD , Director, UCLA Pediatric Bone Marrow Transplant Program, Clinical Director, Pediatric Hematology/Oncology; Associate Professor, Department of Pediatrics, Division of Pediatric Hematology/Oncology, University of California at Los Angeles Medical Center Coauthor(s): Robert D Steiner, MD , Head, Division of Metabolism, Associate Professor, Departments of Pediatrics and Molecular and Medical Genetics, Child Development and Rehabilitation Center, Theodore Moore, MD, is a member of the following medical societies:

25. Canavan Foundation Prevention Through Education And Testing Notfor-profit foundation providing information about Canavan disease, prenatal screening, support, and research. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

26. Canavan Research Foundation Notfor-profit organization dedicated to pioneering research that can treat and eventually cure Canavan and other genetic brain diseases. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

27. Leukodystrophy leukodystrophy information, links to national and international support groups, clinics with genetic counselors and geneticists. http://www.kumc.edu/gec/support/leukodys.html

Leukodystrophy Adrenoleukodystrophy (ALD) Alexanders Disease Canavan Disease (Spongy Degeneration) Cerebrotendinous Xanthomatosis (CTX) Globoid Cell (Krabbes) Leukodystrophy Metachromatic Leukodystrophy (MLD) Neonatal ALD Ovarioleukodystrophy Pelizaeus-Merzbacher Disease Refsum Disease van der Knaap Syndrome Zellweger Syndrome United Leukodystrophy Foundation 2304 Highland Dr., Sycamore, IL 60178 Phone: 800.728.5483 Fax: 815.895.2432 Web Site: www.ulf.org E-mail: ulf@ceet.niu.edu Index of conditions (listed above), Information in Spanish, French, German Adrenoleukodystrophy fact sheet, Sept 1997, National Institutes of Health, Bethesda, MD Pelizaeus-Merzbacher Support Group 209-211 City Road, London EC1V 1JN Phone: 020 7608 8700 Fax: 020 7608 8701 Minicom 020 7608 8702 Helpline 0808 808 3555 Freephone for parents and families (10am-4pm, Mon-Fri) E-mail: info@cafamily.org.uk Web Site: www.cafamily.org.uk/Direct/p15.html Pelizaeus-Merzbacher Disease Support Group Indianapolis, Indiana, E-mail: daviau1@juno.co Newsletter, Annual PMD Family Conference PMD Foundation , (Pelizaeus-Merzbacher Disease), 333 Homestead Avenue, Haddonfield, NJ 08033 Phone: 856.795.1539

28. Joe Johnson MSIE Directed at making life better for people affected by leukodystrophy and those who know and love them. http://www.joejohnson.net/

Joe Johnson and the Call Again Soon BBS My name is Joe Johnson and I built the Call Again Soon to provide a place where people affected by Leukodystrophy , and those who know and love them, can find information. Computers, databases, ever growing online communities and the arrival of the Internet have contributed to the survival of my son, Joey. Without these technologies and the people that make them happen, we would not have connected with the handful of people worldwide that could help. I became so fascinated with Internet technology I went back to school and earned my . Now I earn my living as an Internet Engineer . I love my work and my work loves me. My work is fun and fun for me is trying the latest toy, code scrap, or thing that goes beep. Best of all is the sheer joy of discovering and sharing new stuff with people from all over the world. Please share with me. Make Suggestions and send me links, please. Look around, have fun and remember... Call Again Soon Leukodystrophy Info If you are here looking for information about Leukodystrophy or rare disease, please see my

29. Leukodystrophy Resources Photo Of Joey My son, Joey Johnson, has neonatal adreno leukodystrophy. leukodystrophy FamilyNEW! This site is just starting up but shows great promise http://www.joejohnson.net/leukodystrophy_connections.htm

Leukodystrophy and Adrenoleukodystrophy (ALD) Leukodystrophy Information I have found these resources helpful in my journey through the world of Leukodystrophy. To reach the resource, click on the title. If you have a resource that should be on the list then please let me know about it. Leukodystrophy definition The above link provides definitions for the different types of Leukodystrophy. General Information About Neurological Disorders National Institute of Neurological Disorders and Stroke (NIDS) Martinez Foundation Manuela Martinez Foundation for Children with Metabolic Diseases has been created for the research, diagnosis and treatment of children with peroxisomal disorders and other lipid diseases. Deaf-Blind Information (peroxisomal biogenesis disorders) One of the major effects of infantile Refsum disease, Zellweger's disease and Neonatal Adrenoleukodystrophy is the combination of significant auditory and visual impairment. This page has thourough and easily understandable information on multiple sensory loss. We have made successful use of several of the organizations listed on this page Great Medical Links ...individuals and institutions engaged in ongoing research into peroxisomal disorders. ... for hospitals, doctors, and people in the field of rare diseases and disorders. This is the oldest and most usefull website for the layman and professional alike. When you get there drop a note to the webmaster and ask him to add you to his mail list.

30. Aicardi-Goutières Syndrome News, descriptions, contacts, and other information concerning this leukodystrophy. http://www.aicardi-goutieres.com

Aicardi-Goutières syndrome If your Browser show this, please mail me ! here are the keywords for the search machine : aicardi goutieres goutières syndrom syndrome disease dna kinderkrankheit anfall attack hereditary chromosom erbfehler chromosomen selten rare gen myelin verkalkung interferon alpha özer oezer miller hane dorn lebon voit klepper oriano coppi tew schulz werder kremer dorn crow rodriguez petersen Østergaard Oliveira Why this side about Aicardi - Goutieres syndrom? What is Aicardi - Goutieres syndrome ? How is Aicardi - Goutieres diagnostics ? Childs with Aicardi - Goutieres syndrome !

31. Chemical Leukodystrophy Just a place to consider a possible environmental link to leukodystrophy, the focus is on Chlorinated hydrocarbons. http://www.joejohnson.net/leukodystrophy/peroxide-ald.html

Chemical Leukodystrophy What Relationship Between Leukodystrophy and Chlorinated Hydrocarbon? Start with little gems like this attempt of the Editor to describe this collection of articles about peroxide chemistry titled: Peroxide Chemistry The emphasis was to lie on the development of environmentally acceptable, selective (chemo-, regio-, diastereo- and enantioselectivity) oxidations. One chapter focuses on industrial applications which have to meet both economical and ecological demands to remain competitive in the future. Latest results on the consequences of lipid peroxidation in age-dependent diseases , which range from Alzheimer and Parkinson disorders to diabetes, rheumatic arthritis, atherosclerosis and cardiovascular diseases are also presented. I'm just a layman when it comes to chemistry but books with this type of abstract catch my attention. Here is another flag raiser. From a document reporting findings in workers exposed to solvents.

32. Introduction: Metachromatic Leukodystrophy - WrongDiagnosis.com Introduction to Metachromatic leukodystrophy as a medical condition including symptoms, diagnosis, misdiagnosis, treatment, prevention, and prognosis. http://www.wrongdiagnosis.com/m/metachromatic_leukodystrophy/intro.htm

Home Symptoms Diseases Risks ... Diseases Search our medical database Subscribe to our free Newsletter sample Send this page to a friend Condition Lists By Organ By Symptom By Class By Prevalence ... List A-Z Current chapter: Metachromatic Leukodystrophy Next sections Basic Summary for Metachromatic Leukodystrophy Prognosis of Metachromatic Leukodystrophy Types of Metachromatic Leukodystrophy Symptoms of Metachromatic Leukodystrophy ... Treatments for Metachromatic Leukodystrophy Next chapters: Microcephaly Miller Fisher Syndrome Monomelic Amyotrophy Motor neuron diseases ... Feedback Introduction: Metachromatic Leukodystrophy Metachromatic Leukodystrophy: Brain myelin genetic disorder with various subtypes. 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 covering -which acts as an insulator - on nerve fibers in the brain. Researching symptoms of Metachromatic Leukodystrophy: Further information about the symptoms of Metachromatic Leukodystrophy is available including a list of symptoms of Metachromatic Leukodystrophy , or alternatively return to research other symptoms in the symptom center Treatments for Metachromatic Leukodystrophy: Various information is available about treatments available for Metachromatic Leukodystrophy , or research treatments for other diseases.

33. The Dylan Samuel Freeman Story Dylan has a very rare neurological disorder, Alexanders disease (leukodystrophy). His story, his progress, and photographs. http://www.dylanfreeman.20m.com

The Dylan Samuel Freeman Story About Alexander's Disease Sign My Guest Book Lakeland Ledger Article ... OUR HERO - 11/20/1996 - 4/30/2004 Dylan Samuel Freeman Welcome To My Home Page!!!!! My name is Dylan was 7 years old. He was diagnosed with Alexander's Disease at age 4. The purpose of his web site is to help educate as many people as possible about this rare known disease and hopefully raise funds for research, for a treatment or cure. Maybe the research can't help Dylan. but please continue to donate, so Dylan's friends can be saved Dylan Samuel Freeman November 20th 1996 April 30th 2004 Everyone who meets him out on the town calls him HOLLYWOOD; since he insists on wearing his sunglasses to protect his Beautiful Blue Eyes. Everyone he meets falls in love with him at first sight. He is so polite with his "Hi's, Pleases, and Thank you's". He never wants to see anyone upset and he tries to keep everyone around him happy. His beautiful smile will win your heart the minute you lay eyes on him. Dylan Samuel Freeman, son of Sam and Kathy Freeman, was born on November 20th, 1996 in Brandon, Fl. At the age of 18 months, we noticed that he was having trouble with his balance, but he finally learned to walk at age 2. His doctor mentioned the possibility of mild Cerebral Palsy and said he would probably grow out of it. As it became more noticeable in his speech, we took him to another Neurologist in January 2001 at age 4. He had an MRI done and the doctor dianosed Alexander Disease and advised us to get a second opinion, since this was something that he had only read about at Harvard, but had never seen before.

34. Introduction: Leukodystrophy - WrongDiagnosis.com Introduction to leukodystrophy as a medical condition including symptoms, diagnosis, misdiagnosis, treatment, prevention, and prognosis. http://www.wrongdiagnosis.com/l/leukodystrophy/intro.htm

Home Symptoms Diseases Risks ... Diseases Search our medical database Subscribe to our free Newsletter sample Send this page to a friend Condition Lists By Organ By Symptom By Class By Prevalence ... List A-Z Current chapter: Leukodystrophy Next sections Basic Summary for Leukodystrophy Prevalence and Incidence of Leukodystrophy Types of Leukodystrophy Prevalence of Types of Leukodystrophy ... Doctors and Medical Specialists for Leukodystrophy Next chapters: Adrenoleukodystrophy Classic childhood ALD Adult-onset ALD Female carrier ALD ... Feedback Introduction: Leukodystrophy Leukodystrophy: A group of disorders affecting the myelin sheath of the brain and spinal cord. Contents for Leukodystrophy: Basic Summary for Leukodystrophy Prevalence and Incidence of Leukodystrophy Types of Leukodystrophy Prevalence of Types of Leukodystrophy ... Diseases Did we miss something? Please provide feedback or suggestions By using this site you agree to our . Information provided on this site is for informational purposes only; it is not intended as a substitute for advice from your own medical team. The information on this site is not to be used for diagnosing or treating any health concerns you may have - please contact your physician or health care professional for all your medical needs. Please see our IMPORTANT! Use of this site is subject to our

35. WHAT IS LEUKODYSTROPHY? What is leukodystrophy? WHAT IS leukodystrophy? leukodystrophy is the name given to a group of inherited, progressive genetic disorders. http://www.the-morgan-project.org/WHAT IS LEUKODYSTROPHY.htm

thank you for helping to make the lives of disabled children a little bit better! HOME WELCOME ABOUT US OUR MISSION ... HOW YOU CAN HELP What is Leukodystrophy? WHAT IS LEUKODYSTROPHY? Leukodystrophy is the name given to a group of inherited, progressive genetic disorders. The name comes from the Greek 'leuko', meaning "white" and 'dystrophy' meaning "imperfect growth or development". The nerves in the human body are composed of two parts; the innermost section is called the axon, and is directly responsible for conveying nerve impulses from the brain. Surrounding the axon, rather like insulation around an electrical cord, is the myelin sheath, or 'white matter'. The sheath is made up of a variety of chemicals, and its protective covering is vital to the health and function of the nerve axon within. In Leukodystrophy, a mutation in one of the patient's genes affects the development of one of the multiple chemicals (there are at least 10) that make up the myelin sheath, preventing or inhibiting its development. Without this natural protection the nerve axons are unable to function correctly. Each form of Leukodystrophy affects a different element of the myelin sheath, causing a range of symptoms and affecting different parts of the nervous system, such as the spinal cord and the brain.

36. NINDS Forwarding Page A short information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/health_and_medical/disorders/meta_leu_doc.htm

NINDS has redesigned its website and the URL for the page you were seeking has changed. The new URL for this page is /disorders/metachromatic_leukodystrophy/metachromatic_leukodystrophy.htm . Please update your bookmark to this page. You will be automatically taken to this page in 5 seconds, or you can click the link to go there now.

37. Leukodystrophy leukodystrophy CHORUS document on the different types of leukodystrophy. Metachromatic leukodystrophy (MLD) - Infomration from the Duke University for http://www.ability.org.uk/Leukodystrophy.html

Our Aims Services Stats ... Z Leukodystrophy Alexander disease mini information sheet - From the National Institutes of Health (USA) The Amn-Ald Community Pages - Support site for families dealing with the diseases Leukodystrophies). Canavan Foundation Canavan Research Fund - The Canavan Research Fund is a not-for-profit organization dedicated to pioneering research Cockayne Syndrome treatment, prevention and much more DrKoop.com - Adrenoleukodystrophy Leukodystrophy - CHORUS document on the different types of Leukodystrophy. A little technical. Metachromatic Leukodystrophy (MLD) - Infomration from the Duke University for Patients and their families. United Leukodystrophy Foundation Webmaster . Site Design by Ability "see the ability, not the disability" Acknowledgments

38. The Stennis Foundation Raising public awareness regarding Metachromatic leukodystrophy, and raising funds for MLD research. http://www.stennisfoundation.org

The Stennis Foundation for MLD Online PO Box 30065 Amarillo, TX 79120 Welcome Contact Info E-Mail Upcoming Events ... Special Fundraiser The Stennis Foundation is recognized by the IRS as a tax-exempt charitable organization under section 501(c)3. We need your gifts, large or small, to help us forcefully advance toward a cure for MLD. Donate online by clicking on the "Make a Donation" button or send your gifts to The Stennis Foundation P O Box 30065 Amarillo, TX 79120. Your support is appreciated! Here at The Stennis Foundation We're diligently working so that 2005 Is when MLD will no longer thrive! "One Step Closer" Walk for Leukodystrophy in Paris, TN! Honoring Tucker Wells October 1, 2005 Registration/sign in 7:30 a.m. Walk begins at 8:30 a.m. Memorial Park $10 registration includes T-shirt. Follow these links to: Submit your online registration and fee for the Walk Print your Pledge Sheet Print your Release Form Learn more about The Stennis Foundation Navy "One Step Closer to a Cure"

39. Mississippi River Challenge For Rett Syndrome & Leukodystrophy, Beginning May 10 leukodystrophy refers to a group of genetic disorders that are The pattern of inheritance in leukodystrophy is either autosomal recessive or Xlinked. http://www.mississippichallenge.org/leukodystrophy.html

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 Lisette Guth, age 6. Lisette has a diagnosis of Canavan Disease. Cliff Johnson, 19 years old. Clifford has a diagnosis of Undiagnosed Leukodystrophy. Joshua Black Joshua has a diagnosis of Metachromatic Leukodystrophy. Leukodystrophy What is Leukodystrophy Leukodystrophy refers to a group of genetic disorders that are characterized by the imperfect development or maintenance of the white matter (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. 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.

40. Virtual Hospital Adrenal Leukodystrophy (ALD) Radiology resident case with references and images. http://www.vh.org/Providers/TeachingFiles/RCW/012696/012696.html

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