1. BDFA Batten Disease Family Association Homepage Information about the BDFA, which provides supportive, informative, networking for the families, carers and professional giving care to children and adults with this disease in the United Kingdom. http://www.bdfauk.freeserve.co.uk/

Batten Disease Family Association ...a supportive, informative, networking organisation for the families, carers and professionals giving care to children and adults with Batten disease. Temporary link to Message Board Chairperson:Irena Newcombe Secretary: Debbie Jordan Treasurer: James Pickering Medical liaison: Chris Martland Committee members:Steve Boxall,Sharon Burnham,Emma Callow-Howlett Rachael Griffith ,Sarah Kenrick, Pauline Muncey,Julie Pickering,Kathy Sproger,Sasha Scambler,Jane Timewell,Kathryn Thompson Web site: Alex Newcombe. Last Updated: Wednesday 10th August 2005 You are visitor number: Batten Disease Family Association Heather House, Heather Drive, Tadley, Hampshire RG26 4QR http://www.bdfauk.freeserve.co.uk BDFA98@hotmail.com NEW - Contact Telephone 07914 060742 Patron: Terry Gilliam Registered Charity No.1084908 if you experience any problems with the new format website please contact the webmaster

2. Batten Disease Information Page: National Institute Of Neurological Disorders An Information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/batten/batten.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 Batten Disease 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 Batten Disease NINDS Batten Disease Information Page Synonym(s): Neuronal Ceroid Lipofuscinosis Condensed from Batten Disease Fact Sheet Get Web page suited for printing Email this to a friend or colleague Table of Contents (click to jump to sections) What is Batten Disease? Is there any treatment? What is the prognosis? What research is being done? ... Related NINDS Publications and Information What is Batten Disease? Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. In some cases, the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Symptoms of Batten disease are linked to a buildup of substances called lipopigments in the body's tissues. Lipopigments are made up of fats and proteins. Because vision loss is often an early sign, Batten disease may be first suspected during an eye exam. Often, an eye specialist or other physician may refer the child to a neurologist. Diagnostic tests for Batten disease include blood or urine tests, skin or tissue sampling, an electroencephalogram (EEG), electrical studies of the eyes, and brain scans.

3. The Luke & Rachel Batten Foundation Created to engage in education and medical research toward diagnosis, treatment and/or cure of Juvenile neuronal ceroid lipofuscinosis (batten disease) and to assist persons with the disease. http://lrbf.org

Make a Donation Send this Page to a Friend Contact Us Latest News! ... Links It's SPRING!! That means it is time for the Bluebonnets on the Brazos Fun Run. When: Saturday March 26th Easter Weekend Where: Washington-on-Brazos State Historical Park Sign-up: By clicking below For more information on the Fun Run click below: Bluebonnets on the Brazos Fun Run Brochure (Adobe pdf format) For more information on the Park and surrounding lodgings and attractions click below: PO Box 1526 Cypress, Texas 77410-1526 Article Published citing the Foundation as a contributor. Click for information from the Latest News Section Do you have children. . . maybe grandchildren? Well, imagine this. . . You take your five year-old to the eye doctor because he's complaining about his sight. Your biggest fear is that he'll be burdened with eye glasses. The your world changes when your referred to a pediatric neurologist who diagnoses your child with Batten disease. Batten disease, a little known genetic disorder that has just put your son in the terminally ill category. The nightmare is only half over as soon your only other child your little girl is diagnosed as well. What is Batten Disease It is an inherited neurological disorder, the most common degenerative brain disease in children. It is neuronal ceroid lipofuscinosis. At about age seven your child will go blind and begin suffering seizures. Over the next few years he will lose his memory, motor skills and ability to communicate. He will then become bedridden and have to be fed from a tube.

4. BDSRA: Batten Disease And Research Association Home batten disease Diagnostic and Clinical Research Center Please check out the NewsRelease and the Web site for this exciting new development. http://bdsra.org/

Family Support News Briefs Research and Medical Resources Faces of Batten angels among us 2005 BDSRA Family Conference - This year's conference was held July 21- 24, 2005 in Columbus, Ohio. A big THANK YOU to all who helped organize, made presentations, worked with our kids and just attended. 2006 BDSRA Family Conference will return to Nashville, Tennessee at the Airport Marriot, July 20-23. Make plans to come! We want to see you there. More information as it becomes available. Batten Disease Diagnostic and Clinical Research Center- Please check out the News Release and the Web site for this exciting new development. Car Company, LLC. program - Please check the latest listing on the Family and Event News page for updated information regarding programk. If you have events/articles let us know. Cordoba, Argentine - New book published

5. What Is Batten Disease? batten disease What is batten disease? batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

6. Batten Disease Information Page National Institute Of Neurological batten disease information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

7. BDFA Batten Disease Family Association Homepage batten disease Family Association. A supportive, informative, networking organisationfor the families, carers and professional giving care to children and http://www.bdfauk.freeserve.co.uk/home.htm

Batten Disease Family Association ...a supportive, informative, networking organisation for the families, carers and professionals giving care to children and adults with Batten disease. Temporary link to Message Board Chairperson:Irena Newcombe Secretary: Debbie Jordan Treasurer: James Pickering Medical liaison: Chris Martland Committee members:Steve Boxall,Sharon Burnham,Emma Callow-Howlett Rachael Griffith ,Sarah Kenrick, Pauline Muncey,Julie Pickering,Kathy Sproger,Sasha Scambler,Jane Timewell,Kathryn Thompson Web site: Alex Newcombe. Last Updated: Wednesday 10th August 2005 You are visitor number: Batten Disease Family Association Heather House, Heather Drive, Tadley, Hampshire RG26 4QR http://www.bdfauk.freeserve.co.uk BDFA98@hotmail.com NEW - Contact Telephone 07914 060742 Patron: Terry Gilliam Registered Charity No.1084908 if you experience any problems with the new format website please contact the webmaster

8. Frederik Egold: Kampf Gegen Die Tödliche Krankheit NCL Dargestellt werden allgemeine Informationen ¼ber die unheilbare, todbringende Krankheit NCL (batten disease) und den Kampf von Frederik Egold gegen diese Krankheit. Die Dokumentation erfolgt vorwiegend in Form von Bildergalerien. http://www.frederik-creation.de/

9. Batten Disease Fact Sheet National Institute Of Neurological More about batten disease Studies with patients Research literature Press releases. Disclaimer Search NINDS (help) Contact Us My Privacy http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

10. Testing An Old Drug On Deadly Batten Disease CNN http://cnn.com/2001/HEALTH/conditions/04/02/batten.disease.ap/index.html

11. BDSRA Batten Disease And Research Association Home BDSRA goals, support groups, local chapters, and resources for parents and families of batten disease patients. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

12. Study Finds Autoimmune Link In Juvenile Batten Disease: National Institute Of Ne The National Institute of Neurological Disorders and Stroke (NINDS) is the leadingsupporter of biomedical research on disorders of the brain and nervous http://www.ninds.nih.gov/news_and_events/press_releases/pressrelease_batten_0522

Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system News Press Releases News Articles Funding News Events Calendar of Events Proceedings Online Events Congressional Testimony Search NINDS... (help) Contact Us My Privacy NINDS is part of the National Institutes of Health You are here: Home News and Events Press Releases Study Finds Autoimmune Link In Juvenile Batten Disease For release: Wednesday, May 22, 2002 Overview For years, researchers have tried to determine how the defective gene in juvenile Batten disease leads to the seizures, mental impairment, and other symptoms of this devastating childhood disorder. A new study shows that mice lacking the gene that is altered, or mutated, in this disorder have an immune reaction that disables an important enzyme in the brain. The study also found signs of this reaction in children with Batten disease. The finding provides a new clue about how Batten disease may damage the nervous system and could lead to treatments for the disorder. Get Web page suited for printing Email this to a friend or colleague For years, researchers have tried to determine how the defective gene in juvenile Batten disease leads to the seizures, mental impairment, and other symptoms of this devastating childhood disorder. A new study shows that mice lacking the gene that is altered, or mutated, in this disorder have an immune reaction that disables an important enzyme in the brain. The study also found signs of this reaction in children with Batten disease. The finding provides a new clue about how Batten disease may damage the nervous system and could lead to treatments for the disorder.

13. BDSRA - Batten Disease Support And Research Association What is batten disease? What is the history of batten disease? What are the other forms of NCL? How many people have these disorders? http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

14. What Is Batten Disease? batten disease is a fatal, inherited disorder of the nervous system that begins in batten disease is often fatal by the late teens or twenties. http://www.medhelp.org/lib/batten.htm

Batten Disease What is Batten disease? What are the other forms of NCL? Adult NCL (Kufs disease or Party's disease) generally begins before the age of 40, causes milder symptoms that progress slowly, and does not cause blindness. Although age of death is variable among affected individuals, this form does shorten life expectancy. How many people have these disorders? Batten disease and other forms of NCL are relatively rare, occurring in an estimated 2 to 4 of every 1 00,000 live births in the United States. These disorders appear to be more common in Finland, Sweden, other parts of northern Europe, and Newfoundland, Canada. Although NCLs are classified as rare diseases, they often strike more than one person in families that carry the defective gene. How are NCLs inherited? What causes these diseases? Symptoms of Batten disease and other NCLs are linked to a buildup of substances called lipopigments in the body's tissues. These lipopigments are made up of fats and proteins. Their name comes from the technical word lipo, which is short for "lipid" or fat, and from the term pigment, used because they take on a greenish-yellow color when viewed under an ultraviolet light microscope. The lipopigments build up in cells of the brain and the eye as well as in skin, muscle, and many other tissues. Inside the cells, these pigments form deposits with distinctive shapes that can be seen under an electron microscope. Some look like half-moons, others like fingerprints. These deposits are what doctors look for when they examine a skin sample to diagnose Batten disease.

15. NCL-Stiftung:: Home Die Stiftung informiert ¼ber ihre Ziele und Aktionen und ¼ber die Erkrankung Neuronale Ceroid Lipofuszinose (NCL, engl. batten disease). http://www.ncl-stiftung.de/

N ational C ontest for L NCL Die gemeinnützige Stiftung gegen die tödliche Stoffwechselkrankheit NCL (Neuronale Ceroid Lipofuszinose) Ihre Spende Informationen Was ist NCL ? Die Krankheit Die Stiftung Aktuell Ärztliche Fortbildung Biologie-up-to-date British Day 2005 Cooking for Kids 2005 ... THINK.-Theatre Archiv Was Menschen Bewegen” werden wir in Zukunft an dieser Stelle festhalten English version Diese Website entspricht den Vorgaben des Behindertengleichstellungsgesetzes im Sinne des “ Barrierefreien Internet Sofern Abweichungen registriert werden, kontaktieren Sie bitte den Webmaster - vielen Dank!

16. Welcome To Nathan's Battle Details a boy's fight against Batten's Disease and dedication to promote awareness to help find a cure. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

17. What Is Batten Disease? We Re Sorry This Article Has Been Moved What is batten disease? We re sorry this article has been moved. This articleand many others may be found at http//www.medhelp.org (tip you can copy http://www.medhelp.org/general/batten.txt

What is Batten disease? We're sorry... this article has been moved. This article and many others may be found at: http://www.medhelp.org (tip: you can copy and paste the address into your browser)

18. BDSRA: Batten Disease And Research Association Home BDSRA goals, support groups, local chapters, and resources for parents and families of batten disease patients. http://www.bdsra.org/

Family Support News Briefs Research and Medical Resources Faces of Batten angels among us 2005 BDSRA Family Conference - This year's conference was held July 21- 24, 2005 in Columbus, Ohio. A big THANK YOU to all who helped organize, made presentations, worked with our kids and just attended. 2006 BDSRA Family Conference will return to Nashville, Tennessee at the Airport Marriot, July 20-23. Make plans to come! We want to see you there. More information as it becomes available. Batten Disease Diagnostic and Clinical Research Center- Please check out the News Release and the Web site for this exciting new development. Car Company, LLC. program - Please check the latest listing on the Family and Event News page for updated information regarding programk. If you have events/articles let us know. Cordoba, Argentine - New book published

19. SeeAbility - Juvenile Battens Disease An in depth article on this disorder, includes the stages of the disease and the symptoms. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

20. Batten Disease batten disease is the juvenile form of a group of progressive neurological An inherited disorder of the nervous system, batten disease is an autosomal http://www.nataliefund.org/batten.html

What Is Batten Disease? Medically Speaking Batten Disease is the juvenile form of a group of progressive neurological diseases called 'neuronal ceroid lipofuscinoses' (NCL). Characterized by the accumulation of lipopigment in the brain, as well as in non-neural tissue, these diseases may also be referred to as lipopigment storage disorders. Four main types of NCL, which differ in age onset and lipopigment accumulation, have been identified. These are: Infantile Santavuori disease ): Onset before two years of age Late-Infantile Jansky-Bielschowsky ): Onset before four years of age Juvenile Batten disease, Speilmeyer-Sjogren disease ): Onset before eight years of age Adult Form Kuf disease, Parry disease ): Onset before forty years of age There are also several possible subtypes - protracted, atypical, and earlier or later onset which have similar clinical symptoms and may become apparent at different ages and progress at different rates. Ultimately, all forms are fatal. In the US, the incidence of all four types may be as high as two or three per 100,000 births. Latest News Clinical Trials The Research Batten Disease Diagnosis Causes Progression Causes of Batten Disease An inherited disorder of the nervous system, Batten Disease is an autosomal recessive disease...to be affected, a child must inherit

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