1. United Leukodystrophy Foundation - You Are Not Alone Nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in their health. http://www.ulf.org/

The ULF is supported solely by donations. Help research, education and support by contributing online today. There is hope and we can make a difference. Give Now Shop ULF Merchandise Buy Now Mission Statement: The United Leukodystrophy Foundation is dedicated to helping children and adults who have Leukodystrophy and assisting the family members, professionals and support services that serve them. The ULF is committed to the identification, treatment and cure of all leukodystrophies through programs of education, advocacy, research and service. Site Redesign Please be patient while we construct our new website. Check back soon for new content. Questions or comments? Contact Us Date modified (c) United Leukodystrophy Foundation, Inc. Sycamore, Illinois USA www.ulf.org This website has been developed by: MorningStar MediaGroup LTD.

2. 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 About CHORUS Search Feedback 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 Related CHORUS documents: dysmyelinating disease adrenoleukodystrophy metachromatic leukodystrophy globoid cell (Krabbe) leukodystrophy ... spongy degeneration (Canavan disease) Search for related articles: AJR American Journal of Roentgenology PubMed : index to biomedical literature ... Medical College of Wisconsin

3. 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('93212816', '728', '90'); Main My First Home Page 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 Keep watching New pages to come soon. I am hoping to add a new Journal page as well as update some photo pages. So check back. MY STORY MY FAMILY OTHER CHILDREN MEDICAL INFORMATION ... FUNDRAISERS (New Info 3-18-05) PROGRESS PICTURES MY GUEST BOOK CONTACT ... 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

4. The Family Village / Library / Leukodystrophy Resources on 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 Google 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 Yahoo list of leukodystrophy discussion groups Krabbes E-mail Contacts Inborn Errors of Metabolism Discussion Group MLD Support Learn More About It Alexander Disease From Online Mendelian Inheritance in Man (OMIM) Canavan Disease From Online Mendelian Inheritance in Man (OMIM) Krabbe Disease From Online Mendelian Inheritance in Man (OMIM) Krabbes Disease: Basic Information From the Krabbes Disease Homepage Metachromatic Leukodystrophy, Late Infantile

5. The Myelin Project: Home 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. Information About Lorenzo's Oil and How it Works 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. What is The Myelin Project? ...an international grassroots organization whose mission is to accelerate medical research on myelin repair. What's New EVENT: CURE ALD Fundraiser Lorenzo’s Oil: Advances in the Treatment of Neurometabolic Disorders Follow-up of 89 Asymptomatic Patients With Adrenoleukodystrophy Treated With Lorenzo’s Oil The Myelin Project 2004 Year-End Report is out ... now on DVD..

6. MLD Foundation - Support For Families With Metachromatic Leukodystrophy Information, support, education and online networking for families throughout the world dealing with Metachromatic leukodystrophy (MLD). http://www.mldfoundation.org

7. Introduction To Leukodystrophy Symptoms presented with this disease, the diagnosis and the treatment. http://www.ulf.org/ulf/intro/

U NITED L EUKODYSTROPHY F OUNDATION 2304 Highland Drive Sycamore, Illinois 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. Metachromatic Leukodystrophy Information Page National Institute Metachromatic leukodystrophy information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS). http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

9. Leukodystrophy Information Page National Institute Of leukodystrophy information sheet compiled by NINDS. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

10. 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

setAdGroup('67.18.104.18'); var cm_role = "live" var cm_host = "tripod.lycos.com" var cm_taxid = "/memberembedded" Search: Lycos Tripod Murderball Share This Page Report Abuse Edit your Site ... Next 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 ninth 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 send a message via email to: phillipspc@optusnet.com.au

11. United Leukodystrophy Foundation - You Are Not Alone United leukodystrophy Foundation The leukodystrophies are = genetically determined progressive disorders that affect the brain, = spinal cord and http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

12. Globoid Cell (Krabbe) Leukodystrophy a CHORUS notecard document about globoid cell (Krabbe) leukodystrophy. http://chorus.rad.mcw.edu/doc/00174.html

CHORUS Collaborative Hypertext of Radiology Nervous system About CHORUS Search Feedback globoid cell (Krabbe) leukodystrophy dysmyelinating disease autosomal recessive usually presents by 1 yr specific enzyme deficiency identified rapid spontaneous nystagmus poikilothermia Charles E. Kahn, Jr., MD - 7 July 1995 Last updated 26 May 2004 Related CHORUS documents: leukodystrophy adrenoleukodystrophy Pelizaeus-Merzbacher syndrome Alexander disease ... dysmyelinating disease Search for related articles: AJR American Journal of Roentgenology PubMed : index to biomedical literature ... Medical College of Wisconsin

13. Introduction To Leukodystrophy UNITED leukodystrophy FOUNDATION 2304 Highland Drive Sycamore, Illinois 60178 Phone (800) 7285483 http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

14. Leukodystrophy CHORUS document on the different types of leukodystrophy. A little technical. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

15. Leukodystrophy Information Page: National Institute Of Neurological Disorders An leukodystrophy information sheet compiled by NINDS. http://www.ninds.nih.gov/disorders/leukodystrophy/leukodystrophy.htm

Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system 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 You are here: Home Disorders Leukodystrophy NINDS Leukodystrophy Information Page 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?

16. 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

17. 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 http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

18. Metachromatic Leukodystrophy Information Page: National Institute Of Neurologica Metachromatic leukodystrophy information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS). http://www.ninds.nih.gov/disorders/metachromatic_leukodystrophy/metachromatic_le

Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system 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 You are here: Home Disorders Metachromatic Leukodystrophy NINDS Metachromatic Leukodystrophy Information Page 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. These diseases impair the growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers. Myelin, which lends its color to the white matter of the brain, is a complex substance made up of at least 10 different enzymes. The leukodystrophies are caused by genetic defects in how myelin produces or metabolizes these enzymes. Each of the leukodystrophies is the result of a defect in the gene that controls one (and only one) of the enzymes. MLD is caused by a deficiency of the enzyme

19. Adam Smith Artist tells of his fight against metachromatic leukodystrophy, and shares artwork, poetry, beliefs, and photos. http://www.notthatadamsmith.com/

Home About Adam Smith Art Work ... Photos Welcome to Adam Smith's web site. Our Lady of Guadalupe Print by Adam Smith Adam Smith is an artist who works with a variety of media. He also writes poetry and plays trumpet. Adam's art is inspired by the beauty and folk traditions of his home state of New Mexico, his deep religious faith, his love of horses and his Greek heritage. Adam Smith's art can be acquired through VSA Arts of New Mexico , or contact

20. National Tay-Sachs Allied Diseases Association An organization offering support and programs geared to families affected by TaySachs Disease and over 40 other fatal degenerative genetic http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

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