1. UNITED LEUKODYSTROPHY FOUNDATION Nonprofit, voluntary health organization dedicated to providing patients and their families with informat Category Health Conditions and Diseases leukodystrophy......UNITED leukodystrophy FOUNDATION. Email the ULF. This site last modifiedFeb. 23, 2003. (c) United leukodystrophy Foundation, Inc. Webmaster. http://www.ulf.org/

U NITED L EUKODYSTROPHY F OUNDATION 2304 Highland Drive Sycamore, Illinois USA Phone: (800) 728-5483 FAX: (815) 895-2432 The United Leukodystrophy Foundation (ULF), incorporated in 1982, 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. Leukodystrophies are a group of genetic nervous system disorders affecting the myelin sheath, which insulates the axon through which nerve impulses are conducted. The ULF is supported solely by donations. (Link your site to the ULF site with this logo) Frequently asked questions about ULF Who are the people behind the ULF? Endowment Fund and Funding Opportunities, Medical Research Agencies of America Send comments or apply for membership ... Links to disability resources on the web Now Available: The ULF Public Information VIDEO narrated by Tim Conway (ULF video catalogue #162). This video is available for rent by our members or sale to anyone. For more information on this and other videos

2. The Family Village / Library / Leukodystrophy Alexander Disease, Canavan Disease, Krabbes Disease, Metachromatic leukodystrophy, and Refsum's Disease http://www.familyvillage.wisc.edu/lib_leukodystrophy.html

Leukodystrophy Types of Leukodystophy: Adrenoleukodystrophy, Alexander Disease, Canavan Disease, Krabbes Disease, Metachromatic Leukodystrophy, and Refsum's Disease Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search AltaVista for "Leukodystrophy" Who to Contact United Leukodystrophy Foundation (ULF) 2304 Highland Drive Sycamore IL 60718 (815) 895-2432 (fax) E-mail: ulf@tbcnet.com 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. Where to Go to Chat with Others ULF List of Online Discussion Groups Krabbes E-mail Contacts Inborn Errors of Metabolism Discussion Groups Learn More About It Adrenoleukodystrophy From PEDBASE Alexander Disease From Online Mendelian Inheritance in Man (OMIM) Canavan Disease From Online Mendelian Inheritance in Man (OMIM) Canavan's Disease From PEDBASE Krabbe Disease From Online Mendelian Inheritance in Man (OMIM) Krabbes Disease: Basic Information From the Krabbes Disease Homepage Metachromatic Leukodystrophy From PEDBASE

3. Leukodystrophy Hub Family group supports research on repairing the substance that insulates nerves. Read about progress, publications and organizations. http://www.projectlinks.org/leukodystrophy

Leukodystrophy hub 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. Specific leukodystrophies include metachromatic leukodystrophy, Krabbe leukodystrophy, adrenoleukodystrophy, Pelizaeus-Merzbacher disease, Canavan disease, Alexander disease, Zellweger syndrome, Refsum disease, and cerebrotendinous xanthomatosis. 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. Acne Allergy Antibiotics Antioxidants ... NINDS Leukodystrophy Information Page - by The National Institute of Neurological Disorders and Stroke, National Institutes of Health. Metachromatic leukodystrophy - by MEDLINEplus.

4. Introduction To Leukodystrophy Symptoms presented with this disease, the diagnosis and the treatment.Category Health Conditions and Diseases......UNITED leukodystrophy FOUNDATION. Introduction to leukodystrophy.Outlined below are brief introductions to the leukodystrophies. http://www.ulf.org/ulf/intro/

U NITED L EUKODYSTROPHY F OUNDATION 2304 Highland Drive * Sycamore, Illinois USA 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.

5. Leukodystrophy CHORUS document on the different types of leukodystrophy. A little technical. http://chorus.rad.mcw.edu/doc/00231.html

CHORUS Collaborative Hypertext of Radiology Nervous system Feedback Search leukodystrophy type of dysmyelinating disease hereditary peripheral nervous system unaffected in some disorders Specific diseases: adrenoleukodystrophy metachromatic leukodystrophy spongy degeneration (Canavan) globoid cell (Krabbe) leukodystrophy ... Cockayne syndrome Charles E. Kahn, Jr., MD - 7 July 1995 Last updated 14 March 2001 Medical College of Wisconsin

6. NINDS Leukodystrophy Information Page A short information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.Category Health Conditions and Diseases leukodystrophy...... More about leukodystrophy, Studies with patients, NINDS is part of the National Institutesof Health. NINDS leukodystrophy Information Page Reviewed 1119-2001 http://www.ninds.nih.gov/health_and_medical/disorders/leukodys_doc.htm

National Institute of Neurological Disorders and Stroke Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system Browse all disorders Browse all health organizations More about Leukodystrophy Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health NINDS Leukodystrophy Information Page Reviewed 11-19-2001 Get Web page suited for printing Email this to a friend or colleague Table of Contents (click to jump to sections) What is Leukodystrophy? Is there any treatment? What is the prognosis? What research is being done? ... Organizations What is Leukodystrophy? Is there any treatment? 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?

7. 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

htmlAdWH('7005340', '120', '30'); htmlAdWH('7002028', '234', '60'); Main Create Edit Help Devoted to Brianna New Promising gene therapy for brain illness to begin Gibsonburg girl must wait as cost limits participation Article published June 5, 2001 Make A Child Smile Brianna is April 2001 featured child Aid sought to research rare illness of children Families ask panel for Canavan funds BY RACHEL SMOLKIN BLADE WASHINGTON BUREAU Article published March 16, 2001 A family clings to hope Parent pleads for cure for Brianna’s ‘orphan’ illness BY KELLY LECKER TOLEDO BLADE STAFF WRITER Article published March 11, 2001 Angel Spotlight Brianna is in the spotlight again NTSAD Book of Families Fetal Stem Cell Research MY STORY MY FAMILY ... AWARDS You are visitor # Thanks for visiting me! www.devoted.to/Brianna This page devoted to Brianna by: Impressive Images This website is intended to help those concerned with Canavans Leukodystrophy. It is the intention of Impressive Images to assist in the timely cure and control of this disease, which claims the life of so many precious children. We thank

8. NINDS Metachromatic Leukodystrophy Information Page A short information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.Category Health Conditions and Diseases......Metachromatic leukodystrophy information sheet compiled by the NationalInstitute of Neurological Disorders and Stroke (NINDS). http://www.ninds.nih.gov/health_and_medical/disorders/meta_leu_doc.htm

National Institute of Neurological Disorders and Stroke Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system Browse all disorders Browse all health organizations More about Metachromatic Leukodystrophy Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health NINDS Metachromatic Leukodystrophy Information Page Reviewed 11-19-2001 Get Web page suited for printing Email this to a friend or colleague Table of Contents (click to jump to sections) What is Metachromatic Leukodystrophy? Is there any treatment? What is the prognosis? What research is being done? ... Organizations What is Metachromatic Leukodystrophy? Is there any treatment? There is no cure for MLD. Bone marrow transplantation may delay progression of the disease in some cases. Other treatment is symptomatic and supportive. What is the prognosis? The prognosis for MLD is poor. Death generally occurs within 6 to 14 years after onset of symptoms. In the infantile form death may occur between 3 and 6 years after onset. What research is being done?

9. 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

Get Five DVDs for $.49 each. Join now. Tell me when this page is updated My Homepage About Me My Family My School My Carers My Story 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 seventh 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. albert9@rabbit.com.au

10. Metachromatic Leukodystrophy metachromatic leukodystrophy. dysmyelinating disease autosomal recessive;aryl sulfatase A absent from urine and serum; most present http://chorus.rad.mcw.edu/doc/00263.html

CHORUS Collaborative Hypertext of Radiology Nervous system Feedback Search metachromatic leukodystrophy dysmyelinating disease autosomal recessive aryl sulfatase A absent from urine and serum most present by 2 yrs, die at 3-4 yrs may arise at any age CT: decreased density of white matter, primarily in centrum semiovale focal GB defects Charles E. Kahn, Jr., MD - 2 February 1995 Last updated 14 March 2001 Medical College of Wisconsin

11. OMIM - Metachromatic Leukodystrophy Online Mendelian Inheritance in Man covers MLD, including sections on gene maps, research models and molecular mutations. http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?250100

12. Wang Fei, Jing Chen, and Hans. Photos and information about Hans' medical condition of leukodystrophy. http://ourworld.compuserve.com/homepages/wang/

13. Help Nasten'ka A 3 year old Russian girl needs help to fund a metachromic leukodystrophy treatment. http://www.helpnastya.narod.ru/indexx.html

About Nastya Thank you Our web-friends To specialists ... Russian Department of health services refused to finance Nastya's treatment abroad. They said that Nastya is not perspective. They signed death verdict to little Nastya. But you can help little Nastya! We ask you to spread letter-appeal among internet users. Text of the letter you can find here Doctors from Nurnberg offered to treat Nastya in specialised hospital. The cost of operation is 56200 USD. Please, help Nastya to survive! Sometimes you feel yourself awfully. You think that you are the unhappiest person on Earth.But believe, life can be much severe. Little Nasten'ka Danilova is 4 y.o. First year of life girl developed as other children. But later desease catched her. Nowadays Nastya doesn't hold her head, doesn't turn round, doesn't sit, doesn't stand, doesn't walk, doesn't eat without help. Destruction of brain is in progress. Nastya's diagnosis is metachromatic leukodystrophy. Doctors from Nurnberg offered to treat Nastya in specialised hospital. The cost of operation is 56200 USD. Please, help Nastya to survive! Nastya needs medical treatment abroad. It is impossible to treat this desease in Russia.

14. Natalie's Miracle Natalie suffers from Metachromatic leukodystrophy. This site is about her prayers for healing. http://onin.com/natalie/

Natalie's Miracle This site is dedicated to the Lord Jesus Christ, the Savior, Healer, and Miracle Worker of the world. The Compassionate Great Physician "Rise up Natalie, I have healed you and made you whole." Thank you for visiting the Natalie Meadows Fund web site. This site is currently under construction. We invite you to return often. We would appreciate your prayers and support for Natalie. Please e-mail us at natalies_miracle@onin.com or write us at: Barbara Meadows P.O. Box 681522 Marietta, GA 30068 Visitor Since 9 June 2001 Updated 2 September 2001

15. 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 demyelinating disorders. http://www.myelin.org/

HOME OVERVIEW RESEARCH NEWS ... LINKS When What Matters is the White Matter Oligodendrocytes (red), the myelin-producing cells of the brain, shown here in tissue culture in association with astrocytes (green). The Myelin Project an international grassroots organization whose mission is to accelerate medical research on myelin repair. more Research Progress First in vitro then animals now humans Medical history was made when Myelin Project researchers at Yale University transplanted myelin-forming cells into the brain of a 53-year-old MS patient. more... Myelin Project sponsored approaches to remyelination include the use of olfactory ensheathing cells, stem cells and progesterone. more... Lorenzo's Oil The movie tells the real-life story of Lorenzo Odone and his parents, Augusto and Michaela, the inventors of the oil and the founders of The Myelin Project. var site="s14myelinproject" Tel. (800)-8-MYELIN

16. Metachromatic Leukodystrophy (MLD) The Metachromatic leukodystrophy (MLD) Page. is no longer being maintained. http://www.duke.edu/~pdrh/MLD.html

The Metachromatic Leukodystrophy (MLD) Page is no longer being maintained.

17. METACHROMATIC LEUKODYSTROPHY Pediatric Database (PEDBASE); Discipline MET; Last Updated 12/23/94METACHROMATIC leukodystrophy. DEFINITION A lysosomal storage http://www.icondata.com/health/pedbase/files/METACHRO.HTM

Pediatric Database (PEDBASE) Discipline: MET Last Updated: 12/23/94 METACHROMATIC LEUKODYSTROPHY DEFINITION: A lysosomal storage disorder characterized by the accummulation of lipid (sulfatide) primarily in the central nervous system (CNS) resulting in 3 clinical variants. EPIDEMIOLOGY: incidence: 1/100,000 age of onset: 12-18 months (Type I); 4-12 years (Type II); after puberty (Type III) risk factors: familial - autosomal recessive chrom.#: 22q13.31-qter gene: arylsulfatase A (ARSA) M = F PATHOGENESIS: 1. Background arylsulfatase A is a lysosomal enzyme which catalyzes the hydrolysis of the 3-O-sulfate linkages of cerebroside sulfate (sulfatide) to form galactocerebroside deficiency of arylsulfatase A in MLD first reported by in 1963 by Austin a sphingolipid activator protein (SAP-1) is necessary for the in vivo hydrolysis of sulfatide in MLD, galactosyl sulfatide and to a smaller extent lactosyl sulfatide accumulate in the white matter of the CNS, in the peripheral nerves, and to a lesser extent in the kidneys, gallbladder, and other visceral organs accumulation of sulfatides in the myelin sheath results in the progressive breakdown of membranes of the myelin sheath 2. Genetic Defect

18. Australian Leukodystrophy Support Group Inc http://home.vicnet.net.au/~leuko/

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

Search Now: Contents Joe's Links Jump to a Medline Search Page Leukodystrophy Information United Leukodystrophy Foundation ... Contact Me T his site replaces the Call Again Soon BBS. The Call Again Soon BBS supported over 300,000 log ons since it's inception in 1990. Dumb name but it means a lot to me. The Call Again Soon was dedicated to my son Joey and all those affected by Leukodystrophy. This web site carries on this name and dedication. The mission of the Call Again Soon is to provide a place where people affected by Leukodystrophy and those who know and love them can find information Computers, databases, evergrowing online communities and finally the arrival of the Internet have contributed to the survival of Joey and his family. So..... in case your wondering there is a lot of stuff on this site that points to things unrelated to leukodystrophy. I love my work and my work loves me. My work is automating the Internet. 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. Please share with us. Make Suggestions and send us links, please. So look around, have fun and remember

20. Australian Leukodystrophy Support Group Inc http://home.vicnet.net.au/~leuko/welcome.htm

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