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Batten Disease:     more books (19)

The Neuronal Ceroid Lipofuscinoses (Batten Disease) (Biomedical and Health Research) Batten Disease - A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References by ICON Health Publications, 2004-09-03 Batten Disease: Diagnosis, Treatment, and Research, Volume 45 (Advances in Genetics) The Official Parent's Sourcebook on Batten Disease: A Revised and Updated Directory for the Internet Age by Icon Health Publications, 2002-11-18 Ceroid-lipofuscinoses: Batten disease and allied disorders : proceedings of the International Conference on Ceroid-Lipofuscinoses, held on Staten Island, New York, April 30 and May 1, 1987 Dogs help track down genes.(MEDICAL UPDATE: Cutting-edge news from a source you can trust)(Batten disease): An article from: Saturday Evening Post Batten disease: An entry from Thomson Gale's <i>Gale Encyclopedia of Genetic Disorders, 2nd ed.</i> by Michelle Brandt, 2005 Ceroid Liposfucsinosis: Batten's Disease by D. Armstrong, N. Kappang, et all 1982-04 Batten disease: An entry from Thomson Gale's <i>Gale Encyclopedia of Neurological Disorders</i> by Michelle lee Brandt, Rosalyn, MD Carson-Dewitt, 2005 The dissection of a degenerative disease: Proceedings of four round-table conferences on the pathogenesis of Batten's disease (neuronal ceroid-lipofuscinosis) Batten disease: overview and current research topics by Nuno Osório, Daniel Osório, 2010-06-06 Epizootic hemorrhagic disease in cattle, western Turkey.(DISPATCHES): An article from: Emerging Infectious Diseases by Ethem Mutlu Temizel, Kadir Yesilbag, et all 2009-02-01 Transplacental transmission of bluetongue virus 8 in Cattle, UK.(DISPATCHES)(Report): An article from: Emerging Infectious Diseases by Karin E. Darpel, Carrie A. Batten, et all 2009-12-01 Batten Disease: Diagnosis, Treatment, Research (Advances in Genetics, Vol 45) by Nanbert Zhong K. E. Wisniewski, 2001

lists with details

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
   
   Extractions: 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/

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/
   
   Extractions: 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

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
   
   Extractions: Request free mailed brochure 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? 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
   
   Extractions: 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
   
   Extractions: 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 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

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
   
   Extractions: Subscribe now >> 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

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/
   
   Extractions: 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

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
    
    Extractions: Where can I find more information? 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
    
    Extractions: Where can I find more information? 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
    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
    
    Extractions: 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. 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
    
    Extractions: Batten Disease What is Batten disease? What are the other forms of NCL? 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

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
    
    Extractions: 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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