1. UNITED LEUKODYSTROPHY FOUNDATION UNITED leukodystrophy FOUNDATION. Email the ULF. This site last modified April 30, 2004. (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 2004 Conference Information: The following documents are in Adobe Acrobat format. Click on the Icon to download a free copy. Conference Agenda Registration General information 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) Information for Patients about the Leukodystrophies Listing of the Leukodystrophies Frequently asked questions about ULF Who are the people behind the ULF?

2. Leukodystrophy a CHORUS notecard document about leukodystrophy adrenoleukodystrophy. metachromatic leukodystrophy. spongy degeneration (Canavan) globoid cell (Krabbe) leukodystrophy. Alexander disease 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 26 May 2004 Medical College of Wisconsin

3. NINDS Leukodystrophy Information Page More about leukodystrophy, Studies with patients, NINDS is part of the National Institutes of Health. NINDS leukodystrophy Information Page Reviewed 1201-2003 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 12-01-2003 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?

4. The Family Village / Library / Leukodystrophy leukodystrophy. Types of Leukodystophy Adrenoleukodystrophy, 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

5. NINDS Metachromatic Leukodystrophy Information Page Metachromatic leukodystrophy information sheet compiled by the National Institute 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 12-01-2003 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? Metachromatic leukodystrophy (MLD) is one of a group of genetic disorders called the leukodystrophies 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?

6. Leukodystrophy Hub A brief definition of leukodystrophy, followed by links to research articles, overviews, case reports. leukodystrophy hub. leukodystrophy 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.

7. Introduction To Leukodystrophy 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.

8. 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

Main My First Home Page htmlAdWH('7002588', '234', '60'); 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 Hi Yulinda, Brianna's mom here; I have started a new business called DNB GIFTS. I named my new business after my two girls Donika and Brianna. With having to be home with Brianna this is a new way for me to try to make some extra money to help cover the bills. To view my website and the two sites of those working for me visit DNBGIFTS 1 DNBGIFTS 2 DNBGIFTS 3 MY STORY ... AWARDS You are visitor # Thanks for visiting me!

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

var cm_role = "live" var cm_host = "tripod.lycos.com" var cm_taxid = "/memberembedded" Check out the NEW Hotbot Tell me when this page is updated My Homepage About Me My Family My School My Carers My Story My Story Continued 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 eighth 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 Feel free to sign my Guestbook or send a message via email just click on the following address: http://phillipslauren.tripod.com/contactlauren

10. Leukodystrophy leukodystrophy information, links to national and international support groups, clinics with genetic counselors and geneticists Globoid Cell (Krabbes) leukodystrophy. Metachromatic leukodystrophy 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

11. Leukodystrophy leukodystrophy Menu. This is a webforum to discuss and comment on leukodystrophy. Click here to Enter a new Neurology WebForum article Click Here to Read our Forum Disclaimer and Statement of Purpose 11/20/99) 445 PM. leukodystrophy (11/15/99) 1040 PM http://neuro-www.mgh.harvard.edu/forum/LeukodystrophyMenu.html

Leukodystrophy Menu This is a webforum to discuss and comment on Leukodystrophy. Click here to Enter a new Neurology WebForum article... This Web Forum is not moderated in any sense. Anyone on the Internet can post articles or reply to previously posted articles, and they may do so anonymously. Therefore, the opinions and statements made in all articles and replies do not represent the official opinions of MGH and MGH Neurology. Neither is MGH or MGH Neurology responsible for the content of any articles or replies. No messages are screened for content. - Very Important Message! - Please Click Here to Read Current Posts: Oct 22, 1998 to Present Useful Websites can be found and posted here! (1/5/00) 2:27 PM New MGH Neurology Webforum! (12/30/99) 7:24 PM forum working OK now (12/27/99) 1:10 PM ... test posting (10/22/98) 5:58 PM IMPORTANT: If this page seems to be missing recently added documents, click the "Reload Page" button on your Web Browser to update the menu. Return to the main Neurology WebForum Page. These forums are maintained by the Department of Neurology at Massachusetts General Hospital John Lester - Webspinner

12. 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

13. 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 26 May 2004 Medical College of Wisconsin

14. 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/

OVERVIEW RESEARCH NEWS GLOSSARY ... LINKS Hope for Multiple Sclerosis, the Leukodystrophies, and other Myelin Disorders The film tells the real-life story of Lorenzo Odone and his parents, Augusto and Michaela, inventors of the oil and founders of The Myelin Project. Oligodendrocytes produce the myelin sheath, which wraps in layers around axons. What is Myelin? Myelin is produced by specialized cells: oligodendrocytes in the central nervous system, and Schwann cells in the peripheral nervous system. Myelin sheaths wrap themselves around axons, the threadlike extensions of neurons that make up nerve fibers. Each oligodendrocyte can myelinate several axons. Lorenzo's Oil now on DVD North American version released April 6 A Letter From Augusto Odone February 19, 2004 Events 1st annual Motorcycles for Myelin event organized by Myelin Project of Canada Got The Nerve?

15. 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 Patient Education 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:

16. Home Of Joe Johnson M.S.I.E. 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 a multi line BBS 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

17. 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 !

18. MLD Foundation - Support For Families With Metachromatic Leukodystrophy (MLD) treatment information, education, and an online networking/support group for families throughout the world dealing with Metachromatic leukodystrophy (MLD). http://www.mldfamily.org/

The Premier Family Resource for Metachromatic Leukodystrophy A Listening Ear and a Caring Heart for families affected by Metachromatic Leukodystrophy... Brianne's Hope for Miracle 8k/5k Wlak/Run 2nd Annual Fundraiser - Calgary, Alberta, Canada Trimper/Saginaw Foundation to sponsor fellowship at Duke Raising $50,000 a year for the next two years to advance myelin repair "One Step Closer" MLD Fund Raiser sponsored by the Stennis Foundation raised over $20,000 for MLD research. Boston/New En gland informal gathering Wichita Adult family member informal gathering Brianne's Hope for a Miracle raised over $11,000 for MLD research Brianne's Memorial Walk/Run raised over $2,500 for MLD research (c) 2002-2004, MLD Foundation Donations Tax Exempt per IRS 501(c)3 s="na";c="na";j="na";f=""+escape(document.referrer) Is this your first time here? We're glad that you have found us and while many times your arrival here comes at a time of great personal trauma due to a recent diagnosis or encounter with MLD, we want you to know that you can count on us for support, information and to help you get connected with others that are also on the MLD journey. We welcome you and are here to offer you a Listening Ear and a Caring Heart.

19. 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.

20. NORD - National Organization For Rare Disorders, Inc. leukodystrophy, Metachromatic. View Cart/Checkout. Copyright 1986, 1987, 1988, 1994, 1995, 1997, 2003 Synonyms of leukodystrophy, Metachromatic http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Leukodystroph

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