1. NINDS Batten Disease Information Page Information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/health_and_medical/disorders/batten.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 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 NINDS Batten Disease Information Page Synonym(s): Neuronal Ceroid Lipofuscinosis Reviewed 07-01-2001 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.

2. 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/

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3. BDSRA: Batten Disease And Research Association Home Faces of Batten "angels among us " batten disease Testing. Bulletin Boards on several related subjects. Recent NCL Publications. The Family Room chat rooms. Research Clinical News 2004 RFP 3/1/04. Family and Event News donate vehicles, etc. http://www.bdsra.org/

Correction to Illuminator: The 2004 BDSRA Family Conference will be held August 5 - 8. More information here Batten Disease General Information Faces of Batten "angels among us ..." Batten Disease Testing Sign Our Guest Book help raise awareness Scientific/Medical Advisory Boards Bulletin Boards on several related subjects Recent NCL Publications The Family Room chat rooms 2004 RFP - 3/1/04 The Illuminator most recent, April 2004 Gene Mutation Database and Articles The Lighthouse most recent, Winter 2004 BDSRA Bookshop resources available Family and Event News donate vehicles, etc. Related Links Robby Benson supports BDSRA CFC Agency 2992 for Federal employees support Page Updated/Reviewed

4. Batten Disease Fact Sheet batten disease Fact Sheet (includes infantile, late infantile, juvenile, and adult forms). Where can I find more information? What is batten disease? http://www.ninds.nih.gov/health_and_medical/pubs/batten_disease.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 a disorder Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health Batten Disease Fact Sheet Get Web page suited for printing Email this to a friend or colleague Request free mailed brochure Table of Contents What is Batten disease? What are the other forms of NCL? How many people have these disorders? How are NCLs inherited? ... Where can I find more information? What is Batten disease? Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 and 10, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is often fatal by the late teens or twenties. Batten disease is named after the British pediatrician who first described it in 1903. Also known as Spielmeyer-Vogt-Sjogren-Batten disease, it is the most common form of a group of disorders called neuronal ceroid lipofuscinoses (or NCLs). Although Batten disease is usually regarded as the juvenile form of NCL, some physicians use the term Batten disease to describe all forms of NCL.

5. Batten Disease / Family Village Library Who to Contact. Where to Go to Chat with Others. Learn More About It. Web Sites. Search AltaVista for "batten disease" Who to Contact. batten disease Support and Research Association (BDSRA) 2600 Parsons Avenue. Columbus, Ohio, USA 432072972 ( http://www.familyvillage.wisc.edu/lib_batt.htm

Batten Disease Related Disorders: Santavnori, Jansky, Bielschowsky, Spielmeyer, Sjogren, Kuf, Parry. Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search Google for "Batten Disease" Who to Contact Batten Disease Support and Research Association (BDSRA) 120 Humphries Dr., Suite 2 Reynoldsburg, OH 43068 E-mail: bdsra1@bdsra.org Web: http://bdsra.org/ The Batten Disease Support and Research Association (BDSRA) is an international support and research networking organization that works with families of children and young adults with the inherited neurological degenerative disorder, Battens Disease. They act as a national registry for NCL researchers throughout the world, maximize the opportunities of patients with Batten to lead as normal a life as possible, educate lay persons and professionals about the special needs of patients and their families, and provide a parent communication network for information and emotional support. The association has local chapters and a directory of these is available. They will provide assistance to an individual who wishes to start a local support group, and do parent-to-parent matching. The Batten Disease Support and Research Association publishes a quarterly newsletter

6. Batten Disease What Is batten disease? Medically Speaking. batten disease is the juvenile form of a group of progressive 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

7. Batten Disease batten disease. batten disease is a fatal, inherited disorder of the nervous system that begins in batten disease is named after the British pediatrician who first described it http://healthlink.mcw.edu/article/921388974.html

Search Articles: search tips Please Take the HealthLink Survey Email this article Print this article Find related articles: By topic: Neurology By keywords: Receive Health Link via email! Subscribe now >> Batten Disease Batten disease is a fatal, inherited disorder of the nervous system that begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 and 10, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is often fatal by the late teens or twenties. Batten disease is named after the British pediatrician who first described it in 1903. Also known as Spielmeyer-Vogt-Sjogren-Batten disease, it is the most common form of a group of disorders called neuronal ceroid lipofuscinoses (or NCLs). Although Batten disease is usually regarded as the juvenile form of NCL, some physicians use the term Batten disease to describe all forms of NCL. Batten disease is not contagious or, at this time, preventable.

8. Batten Disease batten disease. batten disease Support Research Association Healthtouch health information search for Batten. Genetic Conditions Support Groups http://www.kumc.edu/gec/support/batten.html

Batten disease 2600 Parsons Ave Columbus, OH 43207 Phone: (800) 448-4570 or (614) 445-4161 Contact: Lance W Johnson e-mail: bdsral@bdsra.org National Institute of Neurological Disorders and Stroke (NINDS) Phone: (800) 352-9424 Also See: National organizations with information on genetic conditions or birth defects - variety of resources Healthtouch health information - search for Batten Genetic Societies Clinical Resources Labs Clinics ... Search Genetics Education Center Debra Collins, M.S. CGC , Genetic Counselor, dcollins@kumc.edu This site subscribes to the principles of the HONcode (Health on the Net, Code of Conduct for Medical and Health Web Sites) of the Health On the Net Foundation

9. BDSRA: Batten Disease And Research Association Home Correction to Illuminator The 2004 BDSRA Family Conference will be held August 5 8. More information here. batten disease General Information, http://bdsra.org/

Correction to Illuminator: The 2004 BDSRA Family Conference will be held August 5 - 8. More information here Batten Disease General Information Faces of Batten "angels among us ..." Batten Disease Testing Sign Our Guest Book help raise awareness Scientific/Medical Advisory Boards Bulletin Boards on several related subjects Recent NCL Publications The Family Room chat rooms 2004 RFP - 3/1/04 The Illuminator most recent, April 2004 Gene Mutation Database and Articles The Lighthouse most recent, Winter 2004 BDSRA Bookshop resources available Family and Event News donate vehicles, etc. Related Links Robby Benson supports BDSRA CFC Agency 2992 for Federal employees support Page Updated/Reviewed

10. BDSRA - Batten Disease Support And Research Association BDSRA batten disease Support and Research Association. batten disease General Information. What is batten disease? What are the forms of NCL/batten disease? http://bdsra.org/batten.htm

Batten Disease General Information What is Batten Disease? What is the history of Batten Disease? What are the other forms of NCL? How many people have these disorders? ... Where can I find more information? What is Batten Disease? Batten Disease is named after the British pediatrician who first described it in 1903. Also known as Spielmeyer-Vogt-Sjogren-Batten Disease, it is the most common form of a group of disorders called Neuronal Ceroid Lipofuscinoses (or NCLs). Although Batten Disease is usually regarded as the juvenile form of NCL, it has now become the term to encompass all forms of NCL. The forms of NCL are classified by age of onset have the same basic cause, progression and outcome but are all genetically different. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease/NCL become blind, bedridden, and unable to communicate and presently is always fatal. Batten Disease is not contagious or, at this time, preventable.

11. BDSRA - Batten Disease Support And Research Association batten disease General Information. What is batten disease? What is the history of batten disease? What are the other forms of NCL? How many people have these disorders? How are NCLs inherited? What http://www.bdsra.org/batten.htm

Batten Disease General Information What is Batten Disease? What is the history of Batten Disease? What are the other forms of NCL? How many people have these disorders? ... Where can I find more information? What is Batten Disease? Batten Disease is named after the British pediatrician who first described it in 1903. Also known as Spielmeyer-Vogt-Sjogren-Batten Disease, it is the most common form of a group of disorders called Neuronal Ceroid Lipofuscinoses (or NCLs). Although Batten Disease is usually regarded as the juvenile form of NCL, it has now become the term to encompass all forms of NCL. The forms of NCL are classified by age of onset have the same basic cause, progression and outcome but are all genetically different. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten Disease/NCL become blind, bedridden, and unable to communicate and presently is always fatal. Batten Disease is not contagious or, at this time, preventable.

12. 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/

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

14. About BDFA Batten Disease Family Association Homepage About batten disease Family Association. About BDFA. The principal aim of the group is to provide contact and support to families affected by batten disease. http://www.bdfauk.freeserve.co.uk/about.htm

About BDFA The principal aim of the group is to provide contact and support to families affected by Batten disease. We intend to keep families informed about recent developments and research at a national and world-wide level. We hope to raise awareness of the illness and hopefully in the future to be able to raise funds to facilitate further advances in understanding and perhaps one-day treating Batten disease. ....to provide a supportive, informative, networking organisation for the families, carers and professionals giving care to children and adults with Batten disease. The Batten Disease Family Association (BDFA) was formed in 1998 by a small group of parents of children with Batten disease. We were greatly helped in getting started by seeAbility and Contact-a-Family. The association exists as a supportive and informative network for parents and carers of children and adults with Batten disease. We are a non-profit making organisation. The Association is based at Heather House which is a residential facility in the south of England purpose built by seeAbility for young adults with visual impairments and profound multiple disabilities or degenerative conditions - particularly those with Juvenile Batten disease. All members of the BDFA steering group are parents or carers of children with Batten disease. We are motivated to develop a better service and information base, so that all current and newly diagnosed children and families have a better start to this devastating journey of Batten disease and may be supported throughout. Our main aim is that no one will go through this process in isolation.

15. 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://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.

16. Batten Disease Articles, Support Groups, And Resources batten disease articles, support groups, and resources for patients from Med Help International (www.medhelp.org). batten disease. http://www.medhelp.org/HealthTopics/Batten_Disease.html

[Health Topics A-Z] A B C D ... Z Batten Disease Ask The Doctor Forums Batten disease (J NCL) carrier testing (Neurology and Neurosurgery Forum) Support Groups: Batten Disease Support and Research Association [Med Help Home] [Library Search] [Medical Forums] ... [Patient Network] Revised: 5/30/2004

17. 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 Thank you to everyone in Chili's Houston Region for their support of the LRBF. What a wonderful success the Golf Classic and Chili's Pepper Partner promotion were for 2004. Bluebonnets on the Brazos Run was also a great success. Thanks to the following for the support: Washington on the Brazos State Park Signmeup.com Luke's Locker Houston 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.

18. Mainpage CHOICE For Partners Healthcare Health and wellness services, medical information, and interactive health features for our user community. batten disease is the most common form of a group of rare disorders known as neuronal ceroid lipofuscinoses (NCLs). batten disease is an inherited genetic disorder http://community.healthgate.com/GetContent.asp?siteid=partners&docid=/dci/ba

19. HealthlinkUSA Batten Disease Links FindWhat. You can find batten disease right now at Info.com. Kanoodle.com. Click here for page 1 of batten disease information from the HealthlinkUSA directory. http://www.healthlinkusa.com/40ent.htm

20. Batten Disease; Treatment, Prevention, Cure batten diseaseSearch information from many of the best batten disease health sites. batten disease What research is being done? http://www.healthlinkusa.com/content/40.html

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