41. Batten Disease International. 20 affiliated groups. Founded 1987. Emotional support for personswith batten disease. http://my.webmd.com/hw/health_guide_atoz/shc29bat.asp

var guid_source = ""; var guid_source_id = ""; //unused var encodedurl = ""; WebMD Today Home WebMD News Center XML News via RSS Member Services WebMD University My WebMD Find a Physician Medical Info Check Symptoms Medical Library Health Tools Clinical Trials ... Women, Men, Lifestyle Who We Are About WebMD Site Map You are in Medical Library Choose a Topic Our Content Sources Ask A Question Clinical Trials Health Guide A-Z Health Topics Symptoms Medical Tests Medications ... Batten Disease Support and Research Association Batten Disease Batten Disease Support and Research Association International. 20 affiliated groups. Founded 1987. Emotional support for persons with Batten disease. Information and referrals, support group meetings, phone support, conferences, newsletter. Assistance provided for starting new groups. WRITE: 120 Humphries Dr., Suite 2 Reynoldsburg, OH 43068 CALL: 1-800-448-4570 E-MAIL: bdsra1@bdsra.org WEBSITE: http://bdsra.org VERIFIED: 3/22/2004 The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information. For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp

42. Batten Disease batten disease is the juvenile form of a group of progressive neurological diseasesknown as neuronal ceroid lipofuscinoses (NCL). http://www.bchealthguide.org/kbase/nord/nord259.htm

var hwPrint=1;var hwDocHWID="nord259";var hwDocTitle="Batten Disease";var hwRank="1";var hwSectionHWID="nord259-Header";var hwSource="en-caQ2_05";var hwDocType="Nord"; National Organization for Rare Disorders, Inc. Batten Disease Important It is possible that the main title of the report Batten Disease is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report. Synonyms Batten-Mayou Syndrome Batten-Spielmeyer-Vogt's Disease Batten-Vogt Syndrome Neuronal Ceroid Lipofuscinosis, Juvenile Type Spielmeyer-Vogt Disease Spielmeyer-Vogt-Batten Syndrome Stengel's Syndrome Stengel-Batten-Mayou-Spielmeyer-Vogt-Stock Disease Disorder Subdivisions None General Discussion Batten disease is the juvenile form of a group of progressive neurological diseases known as neuronal ceroid lipofuscinoses (NCL). It is characterized by accumulation of a fatty substance (lipopigment) in the brain as well as in tissue that does not contain nerve cells. This lipopigment storage disorder is inherited, and is marked by rapidly progressive vision failure (optic atrophy), and neurological disturbances, which may begin before eight years of age. Occurring mostly in families of Northern European Scandinavian ancestry, the disorder affects the brain and may cause both deterioration of intellect and neurological functions. Resources CLIMB (Children Living with Inherited Metabolic Diseases) Climb Building 176 Nantwich Road Crewe, Intl CW2 6BG

43. Brain Foundation - Batten Disease batten disease is a fatal, inherited disorder of the nervous system that begins in Also known as SpielmeyerVogt-Sjogren-batten disease, it is the most http://www.brainaustralia.org.au/AZ_of_Brain_Disorders/batten_disease

Home About Us The Brain Healthy Brain ... Site Map DHTML_MENU_rel_path = '/squizlib/dhtml_menu/images/'; Batten Disease [Neuronal Ceroid Lipofuscinoses (or NCLs)] Description Batten Disease is a fatal, inherited disorder of the nervous system that begins in childhood. It is named after the British pediatrician who first described it in1903. 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 describe all forms of NCL. The basic cause, progression, and the outcome are the same. The forms of NCL are classified by age of onset, and eight different genes [CLN1 – CLN8] have been identified as causing the disorder. The first sign of the disease is often loss of vision, and may first be suspected during an eye examination. Other early signs are subtle, but may include personality and behaviour 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 Juvenile Batten Disease become blind, bedridden, and unable to communicate. Juvenile Batten Disease is always fatal by the late teens or twenties. There are four main types of NCL/Batten Disease, including two forms that begin earlier in childhood and a very rare form that strikes adults. The symptoms are similar but they become apparent at different ages and progress at different rates.

44. Welcome To The Trust Page WELCOME TO JORDAN S. batten disease RESEARCH TRUST. Jordan s story What isbatten disease? Contact information, donations and related links http://www.jordanforbatten.aunz.org/

WELCOME TO JORDAN'S BATTEN DISEASE RESEARCH TRUST Jordan's story What is Batten Disease? Contact information, donations and related links Alanna Gayko's ride "Around Oz" ... Jordan's 2nd Fundraising Ball - 2001

45. What Is Batten's Syndrome batten disease is named after the British pediatrician who first described it in1903. Also known as SpielmeyerVogt-Sjogren-batten disease, it is the most http://www.jordanforbatten.aunz.org/battens_description.htm

What is Batten Disease? B atten 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 describe all forms of NCL. The basic cause, progression, and the outcome are the same. The forms of NCL are classified by age of onset 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 Juvenile Batten Disease become blind, bedridden, and unable to communicate. Juvenile Batten Disease is always fatal by the late teens or twenties. Batten Disease is not contagious or, at this time, preventable. History of Neuronal Ceroid Lipofuscinosis The first probable instances of this condition were reported in 1826 by Dr. Christian Stengel in a Norwegian medical journal, who described 4 affected siblings in an small mining community in Norway. Although no pathological studies were performed on these children the clinical descriptions are so succinct that the diagnosis of the Spielmeyer-Sjogren (juvenile) type is fully justified. More fundamental observations were reported by F. E. Batten in 1903, and by Vogt in 1905, who performed extensive clinicopathological studies on several families. Retrospectively, these papers disclose that the authors grouped together different types of the syndrome. Furthermore Batten, at least for some time, insisted that the condition that he described was distinctly different from Tay-Sachs Disease, the prototype of a neuronal lysosomal disorder now identified as GM2-Gangliosidosis type A.

46. Institute Of Psychiatry (IoP) - Batten Disease / Pediatric Storage Disorders Lab batten disease / Pediatric Storage Disorders laboratory (PSDL) http://www.iop.kcl.ac.uk/iopweb/departments/home/default.aspx?locator=382

47. Institute Of Psychiatry (IoP) - Batten Disease / Pediatric Storage Disorders Lab batten disease / Pediatric Storage Disorders laboratory (PSDL) http://www.iop.kcl.ac.uk/iopweb/departments/contact/default.aspx?locator=382

48. What Is Batten Disease? From The Natey Foundation Having a child with batten disease has changed every aspect of our lives.Since that day in October 1996 we have learned much about batten disease. http://www.nateyfoundation.org/disease.html

What is Batten Disease? The medical terms that now flow freely from our mouths would have been lost on us two years ago. Having a child with Batten Disease has changed every aspect of our lives. Since that day in October 1996 we have learned much about Batten Disease. First the statistics: Batten disease is a autosomal recessive disease. 1 in 100,000 people carry one type of the recessive genes for Batten Disease. There are four types of the disease. Both Parents must carry the same type of gene in order for their children to be affected. Only one in four children born from parents, both with the same type of gene will be affected Our son Natey was our first child together. Basically, it is as if there were 800,000 people in one room. Only two carry the gene for late infantile Batten Disease. They meet, marry, and their first child together is affected. Comprehending and accepting that this actually happened is difficult, in and of itself. There are four types of the disease. Infantile - Onset age: 6 months - 2 years. Children with infantile form generally live to age 5-10. Late Infantile- Onset age: 2-4 years. Children with late infantile form live to age 8-12.

49. Batten Disease batten disease is the most common form of a group of rare disorders known as batten disease is an inherited genetic disorder that causes a buildup of http://healthgate.partners.org/browsing/browseContent.asp?fileName=23620.xml&tit

50. Connors Battle With JNCL (Batten Disease) Connors Battle with JNCL (batten disease) chronicles the struggles of a youngboy suffering a rare, fatal, genetic disease called batten disease. http://www.connorsbattle.com/home.htm

Help us and other victims to Find a Cure! Connors Wish This is the day... we all got to forget I was sick. Special thanks from the Allbee Family to and Michael Hohl RV Center for making Connors wish come true. This is Connor Allbee. A normal happy 7 year old boy, except for one thing. Connor has just been diagnosed with JNCL* or Juvenile Batten Disease. Batten disease is a brutal, debilitating disease that cripples and tortures it's young victims before it kills them Connor has the following in his future: Currently he is almost totally blind Soon he will start having seizures Dementia will set in Paralysis and loss of normal functions Feeding tubes Death *Juvenile Neuronal Ceroid Lipofuscinosis A Little About Connor Connor was born Sept. 13, 1994. Connor was the third of three children, and the only boy born to Derek and Christy Allbee Connor was born and lives in Reno, Nevada Connor loves to go camping and fishing with his family. Connor has a sister Kelsey 14, and another sister Katie, 12, who love him very much.

51. Elsevier.com - Batten Disease Diagnosis, Treatment, And Research, 45 This title will present all current knowledge of batten disease from research toclinical evaluation. NCL is not well recognized in underdeveloped countries http://www.elsevier.com/wps/product/cws_home/675462

Home Site map Regional Sites Advanced Product Search ... Batten Disease: Diagnosis, Treatment, and Research, 45 Book information Product description Audience Author information and services Ordering information Bibliographic and ordering information Book related information Submit your book proposal Other books in same subject area About Elsevier Select your view BATTEN DISEASE: DIAGNOSIS, TREATMENT, AND RESEARCH, 45 To order this title, and for more information, go to http://books.elsevier.com/bookscat/links/details.asp?isbn=0120176459 Jeffrey Hall , Brandeis University, Waltham, Massachusetts, U.S.A. Jay Dunlap , Dartmouth Medical School, Hanover, New Hampshire, U.S.A. Theodore Friedmann , University of California at San Diego, School of Medicine, U.S.A. Francesco Giannelli , United Medical and Dental Schools of Guy?s and St. Thomas? Hospitals, London, U.K. Krystyna Wisniewski , George A. Jervis Diagnostic and Research Center, Staten Island, New York, U.S.A. Nanbert Zhong , George A. Jervis Diagnostic and Research Center, Staten Island, New York, U.S.A. Description This title will present all current knowledge of Batten disease from research to clinical evaluation. NCL is not well recognized in underdeveloped countries because the diagnostic technology is lacking. With the information in this volume, however, a specific diagnosis of NCL could be made. Also, specific familial mutations obtained through genetic tests may guide prenatal diagnoses for at-risk families.

52. URMC Batten Disease And Clinical Research Center - Home Many children are given a preliminary diagnosis of batten disease. The BattenDisease Diagnostic and Clinical Research Center has the following core http://dbb.urmc.rochester.edu/labs/pearce/bddcrc/

Many children are given a preliminary diagnosis of Batten disease. Having a center that can provide accurate diagnosis and clinical management of all forms of Batten disease will expedite the development and refinement of the clinical tools necessary for the evaluation of the progression of these devastating diseases. The Batten Disease Diagnostic and Clinical Research Center has the following core components and objectives: 1. Genetic diagnosis of Batten disease. 2. Clinical evaluation of Batten disease. 3. Continued development of the UBDRS, a clinical rating scale for Batten disease 4. Education. 5. Interaction with current research into Batten disease. 6. Development and design of clinical trials for JNCL. University of Rochester Press Release Donate to Batten Disease Research at Rochester

53. URMC Batten Disease And Clinical Research Center - Contact Information If you would like to make a donation to research on batten disease please senda check made payable to The University of Rochester , indicating that the http://dbb.urmc.rochester.edu/labs/pearce/bddcrc/donation.htm

If you would like to make a donation to research on Batten disease please send a check made payable to "The University of Rochester", indicating that the donation is intended for research on Batten disease to: David A Pearce Center for Aging and Developmental Biology, Department of Biochemistry and Biophysics and Department of Neurology, University of Rochester School of Medicine and Dentistry, 601 Elmwood Avenue, Rochester NY 14642 USA Donations

54. Illnesses And Disabilities - Batten Disease Symptoms of batten disease — a rare, progressive disorder of the nervous batten disease is inherited and there is no specific treatment to halt or http://www.4woman.gov/wwd/wwd.cfm?page=34

55. Batten Disease batten disease Support Research Association 2600 Parsons Ave Columbus, OH 43207Phone (800) 4484570 or (614) 445-4161 Contact Lance W Johnson 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

56. Batten’s Disease (late Infantile Form) Factsheet Late Infantile Batten’s disease is caused by an abnormal buildup of substances in The batten disease Family Association (BDFA) can provide information, http://www.ich.ucl.ac.uk/factsheets/families/F040272/

Please use the alphabetical index below to find the factsheet you need. Top Top Top Top ... Top (late infantile form) Contents Introduction How is it diagnosed? Does it have any alternative name? Is it inherited? ... Support Group Introduction How is it diagnosed? Diagnosis is now usually made by examining a piece of skin under a microscope (confirming the presence of the specific abnormal substance) or by a blood enzyme test. Does it have any alternative name? Is it inherited? Is prenatal testing available? Due to recent advances in genetic studies, prenatal testing for Late Infantile Batten Disease is now possible. How common is it? It is estimated that the incidence in the UK is approximately one in every 200,000 people. How does the disease progress? Is there any treatment? Although there is no treatment yet available that can stop the disease, every effort is made to treat the symptoms as they occur. Drugs can be given to help control the seizures, relieve muscle spasms, and treat infections. Pain relief and sedative drugs can be given if required, and feeding can be assisted. Physiotherapists and others can advise you about positioning, seating and exercising the limbs to maintain comfort. Specialist schooling will be required and it is important for your child to have this stimulating environment and social contact and, indeed, for you to have some time for yourself and other family members and friends. Though not scientifically proven, many children gain some symptomatic relief from some of the complementary therapies such as cranial osteopathy and massage.

57. Batten's Disease (juvenile Form) Factsheet This leaflet explains about Juvenile Batten’s Disease, which is a rare inherited The batten disease Family Association ( BDFA) can provide information, http://www.ich.ucl.ac.uk/factsheets/families/F040271/

Please use the alphabetical index below to find the factsheet you need. Top Top Top Top ... Top (juvenile form) Contents Introduction How is it diagnosed? Does it have any alternative name? Is it inherited? ... Support Group Introduction How is it diagnosed? Diagnosis is now usually made by examining a piece of skin, under a microscope, or by gene tests on blood. Does it have any alternative name? Is it inherited? Is prenatal testing available? How common is it? It is estimated that the incidence in the UK is approximately one in every 150,000 people. How does the disease progress? Your child is likely to start to show some signs of clumsiness, difficulty with school-work and deteriorating vision between the ages of five to nine years. Within a few years, vision is completely lost and, for some time, this may be the only obvious problem. Over time, however, understanding and concentration become increasingly difficult and your child may also become unsteady and somewhat shaky. Epileptic seizures usually start at around ten years and, also at this age, behaviour can be erratic and challenging. This is due both to the disease process, and frustration and confusion with what is happening. The course of the disease can vary quite considerably and your child may seem quite stable for long periods but gradually, throughout the teenage years, physical and mental skills are lost until he or she is unaware of his or her surroundings and need total care.

58. What Is Batten Disease ? batten disease or NCLs is a fatal disease that effects mostly children, batten disease is a autosomal recessive disorder, that occurs when a child http://joeldfamily.homestead.com/files/Batten_information_for_web.htm

What is Batten Disease ? The information you are about to read is based on our exspeirence and research and is not intended to replace a diagnoses from a qualified physician. Batten Disease or NCLs is a fatal disease that effects mostly children, however more rare is an adult form of Batten. NCL stands for Neuronal Ceroid Lypofuscinosis , which are a group of disorders but because the name is so difficult to pronounce the name Batten Disease is used to cover them all. NCL have the same cause, progression and outcome. They are lysosomal storage disorders , which means that the lysosome, a small membrane bound structure found in most cells stores material that it would normally recycle. The lysosome contain enzymes whose job it is to break down other proteins for elimination. A missing lysosomal protein can cause a build up of proteins. Batten disease is a autosomal recessive disorder, that occurs when a child inherits two copies of the defective genes, one from each parent. Thus, both parents are carriers of these genes. The parents who are carriers, there children face a one in four chance of developing NCL. At the same time, each child also faces a one in two chance of inheriting just one copy of the defective gene . Individuals who have only one defective gene, do not develop the disease, however, they can pass it on to there children. When a family has children with a certain type of batten disease, members of that family will have the same type, in other wards, if the effected child is diagnosed with Juvenile form of batten disease, some one in the family can't develop another form such as infentile or adult form. One type stays with one family. However there may be cases where variant forms have developed.

59. IRSC - Rare Disorders, Batten Disease The Internet Resources for Special Children (IRSC) Global disABILITY resourceis dedicated to communicating information relating to the needs of children http://www.irsc.org:8080/irsc/irscmain.nsf/sub?readform&cat=Rare Disorders&subca

60. Batten Disease Information and links on batten disease. batten diseasehttp//wwwnmcp.med.navy.mil/neurolog/dzbatten.htm. Last major form of Battendisease discovered http://www.doctorpage.com/findit/Diseases_and_Conditions/Batten_Disease/

doctorpage Diseases and Conditions Batten Disease Displaying listings 1-4 Batten Disease  http://www.ninds.nih.gov/HEALINFO/disorder/batten/battenfs.htm Batten Disease  http://www-nmcp.med.navy.mil/neurolog/dzbatten.htm Last major form of Batten disease discovered  http://www.ninds.nih.gov/WHATSNEW/presswhn/1997/batten.htm Lifelink Search Forum: Batten Disease  http://mcrcr2.med.nyu.edu/murphp01/batten.htm Listings 1-4 of 4 displayed. Add a Site to This Page Get A Free Site Find Physicians Cosmetic Surgery ... Findit Try this search on... HotBot Infoseek AltaVista Excite ... Metacrawler doctor page .com

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