21. ABC11 TV -- Hope At Duke For Children With Sanfilippo Syndrome net. Monday, November 25, 2002. Hope at Duke for Children with sanfilippo syndromeBy Angela Hampton. For more information on sanfilippo syndrome, go to http://www.helpachild.net/bennett/publicity/tv/abc11tv/11-25-02.htm

h e l p a c h i l d . n e t Monday, November 25, 2002 Hope at Duke for Children with Sanfilippo Syndrome By Angela Hampton We have an update on a story about three children with Sanfilippo Syndrome - a rare genetic disease that is usually fatal. But one of the children was eligible for an experimental and potentially life-saving treatment at Duke. He received that treatment Friday, and now his parents and doctors are waiting for a miracle. Three-year-old, Tommy Bennett has spent more time in the hospital than most people will in a lifetime. But this trip to Duke could save his life. On Friday, Tommy received a stem cell transplant from umbilical-cord blood. "It's coming, slowly, but surely." Tommy's parents Alicia and John Bennett believe the 20-minute transfusion was the beginning of the rest of their son's life. The Bennetts' came to Duke from California to help all three of their children. Tommy, along with 4-year-old Hunter, and 6-year-old Ciara have the rare genetic disease Sanfilippo Syndrome. Their bodies are missing an enzyme that leads to brain and organ damage and kills most kids in their teens. But only Tommy's illness is potentially treatable, because it isn't as advanced.

22. ABC11 TV -- Sanfilippo Syndrome sanfilippo syndrome By Angela Hampton A California family has come to Duke foran experimental treatment they hope will save one of their children's lives. http://www.helpachild.net/bennett/publicity/tv/abc11tv/11-4-02.htm

h e l p a c h i l d . n e t Monday, November 04, 2002 Sanfilippo Syndrome By Angela Hampton A California family has come to Duke for an experimental treatment they hope will save one of their children's lives. All three of their kids have a rare genetic disease that will probably kill them by age 15. But a new procedure may give one boy a chance at life. The three children were born with Sanfilippo Syndrome. It's a rare disease that develops in the first few years of a child's life, and is often mis-diagnosed. There is no cure. The children's parents have brought them to Duke because it's the only medical center in the world doing stem cell transplants using umbilical cord blood to try to reverse some of the symptoms of Sanfilippo. John Bennett has brought his sons from northern California to Durham, to try to save their young lives. "Feed the fishies. Fishies like bread too." Three-year-old Tommy, and 4-year-old Hunter, are very sick with a rare genetic disease. Sanfilippo Syndrome robs their little bodies of an enzyme that breaks down sugar molecules. It causes severe brain and organ damage, and premature death. "Most Sanfilippo kids, if they do live to 15, are bedridden vegetables."

23. CCHS Clinical Digital Library Disorders. sanfilippo syndrome Clinical Resources. Pediatric Database (PEDBASE)List of documents sanfilippo syndrome A Access document. Radiology http://cchs-dl.slis.ua.edu/clinical/metabolism/inborn/lysosomalstorage/mucopolys

Clinical Resources by Topic: Metabolic Disorders Sanfilippo Syndrome Clinical Resources Pediatrics Radiology Pathology Genetics ... Miscellaneous Resources See also: Genetic Testing Clinical Resources Mental Retardation Clinical Resources General Genetic Disorders Clinical Resources General Metabolic Disorders Clinical Resources ... Sanfilippo Syndrome Patient/Family Resources Harrison's Principles of Internal Medicine 15th Ed.-2001: Table of contents Health Sciences Library subscription INFO Chapter 349: Lysosomal Storage Diseases: Table of contents General Features: Access document Physiology of Lysosomes: Access document Pathogenesis of Lysosomal Storage Diseases: Access document Specific Disorders: Access document Mucopolysaccharidoses: Access document Hoffman: Hematology: Basic Principles and Practice 3rd Ed.-2000 (MD Consult): Table of contents Health Sciences Library subscription INFO Chapter 44 - Lysosomal Storage Diseases: Perspective and Principles: Access document The Concept of the Lysosome: Access document Physiology of Lysosomes: Access document Pathophysiology of Lysosomal Storage Diseases: Access document Molecular Genetic Mechanisms of Lysosomal Storage Diseases: Access document Genotype/Phenotype Correlations: Access document Therapeutic Approaches and Implications: Access document Results and Lessons from Therapy: Access document Diagnosis of Lysosomal Storage Diseases: Access document Goetz: Textbook of Clinical Neurology 1st Ed.-1999 (MD Consult):

24. CCHS Clinical Digital Library sanfilippo syndrome Patient/Family Resources. Miscellaneous. sanfilippo syndromeAccess document. Miscellaneous sanfilippo syndrome Patient/Family Resources http://cchs-dl.slis.ua.edu/patientinfo/metabolism/inborn/lysosomalstorage/mucopo

Patient/Family Resources by Topic: Metabolic Disorders Sanfilippo Syndrome Patient/Family Resources Spanish Miscellaneous See also: Mental Retardation Patient/Family Resources Genetic Testing Patient/Family Resources General Genetic Disorders Patient/Family Resources General Metabolic Disorders Patient/Family Resources ... Sanfilippo Syndrome Clinical Resources Canadian MPS Society: Homepage MPS and ML Disorders: Table of contents MPS 3 - Sanfilippo Syndrome: Access document Diseases: List of documents Sanfilippo Syndrome: Table of contents MEDLINE plus Medical Encyclopedia: Table of contents Sanfilippo Syndrome: English Spanish Spanish MEDLINE plus Medical Encyclopedia: Table of contents Sanfilippo Syndrome: English Spanish Miscellaneous Sanfilippo Syndrome Patient/Family Resources The Family Village Library - Specific Diagnoses Card Catalog Table of contents Mucopolysaccharidosis: Access document Healthfinder (US DHHS): Homepage Genetics: List of documents National Library of Medicine MEDLINE plus Health Topics: Index Genetic Testing/Counseling: List of documents Genetic Disorders: List of documents YAHOO - Health:Diseases and Conditions:Genetic Disorders Additional Genetic Disorders resources ( These sites have not been reviewed.

25. Untitled MPS type IIIA (IDUA); sanfilippo syndrome type A. MPS type IIIB (NAGLU); Sanfilipposyndrome type B MPS type IIIC (GNAT); sanfilippo syndrome type C. http://www.peds.umn.edu/gene/mutation/

Clicking on the name of the condition links to the corresponding description at the Online Mendelian Inheritance in Man ( OMIM ) site. Mutations for each gene for MPS are being tabulated to describe the global experience. In each case, clicking on the HUGO abbreviation (denoted in parentheses) links to a Mutation Database for that gene. In many cases, such mutation can be "correlated" with various phenotypes (i.e., "genotype-phenotype correlation") with the hobe that the cummulative experience will provide predictive information (i.e., "prognosis") as well as assist in the interpretation of experimental clinical trials. Those who use this information are encouraged to check its validity and to notify the Curator of any errors or new information. MPS type I (IDUA); Hurler, Scheie, and Hurler-Scheie, syndromes MPS type II (IDS); Hunter syndrome MPS type IIIA (IDUA); Sanfilippo syndrome type A MPS type IIIB (NAGLU); Sanfilippo syndrome type B NAGLU mutations MPS IIIB genotype-phenotype correlations MPS type IIIC (GNAT); Sanfilippo syndrome type C MPS type IIID (G6S);

26. MPS LINKS sanfilippo syndrome Type A MUCOPOLYSACCHARIDOSIS TYPE IIIA. SanfilippoSyndrome Type B MUCOPOLYSACCHARIDOSIS TYPE IIIB. Sanfilippo http://www.peds.umn.edu/gene/other/mpslinks/

MPS Information Information on the Mucopolysaccharidosis diseases is available from the Online Mendialian Inheritence in Man (OMIM) web site provided by the National Institutes of Health. Links to information on the following are available: Mucopolysaccharidosis, Unclassified types MUCOPOLYSACCHARIDOSIS, UNCLASSIFIED TYPES Hurler Syndrome, Scheie Syndrome, Hurler-Scheie Syndrome MUCOPOLYSACCHARIDOSIS TYPE I; MPS I Morateuax-Lamy Syndrome MUCOPOLYSACCHARIDOSIS TYPE VI; MPS VI Sanfilippo Syndrome Type A MUCOPOLYSACCHARIDOSIS TYPE IIIA Sanfilippo Syndrome Type B MUCOPOLYSACCHARIDOSIS TYPE IIIB Sanfilippo Syndrome Type C MUCOPOLYSACCHARIDOSIS TYPE IIIC Sanfilippo Syndrome Type D MUCOPOLYSACCHARIDOSIS TYPE IIID Diferrante Syndrome MUCOPOLYSACCHARIDOSIS TYPE VIII Hunter Syndrome MUCOPOLYSACCHARIDOSIS TYPE II; MPS II; MPS2 Morquio Syndrome MORQUIO SYNDROME, NONKERATOSULFATE-EXCRETING TYPE Morquio Syndrome A MUCOPOLYSACCHARIDOSIS TYPE IVA Morquio Syndrome B MUCOPOLYSACCHARIDOSIS TYPE IVB Sly Syndrome MUCOPOLYSACCHARIDOSIS TYPE VII Pseudo-Hurler Polydystrophy MUCOLIPIDOSIS III; ML III; ML3

27. Health Library - Sanfilippo Syndrome sanfilippo syndrome. Synonyms urine. There are four types of SanfilippoSyndrome; types A and B are the most common forms. Resources. http://health_info.nmh.org/Library/HealthGuide/IllnessConditions/topic.asp?hwid=

28. Sanfilippo Syndrome sanfilippo syndrome. Definition This substance is called heparan sulfate, andin sanfilippo syndrome, large amounts of it are excreted in the urine. http://www.pennhealth.com/ency/article/001210.htm

Disease Injury Nutrition Poison ... Prevention Sanfilippo syndrome Definition: Sanfilippo syndrome is one of the hereditary mucopolysaccharide storage diseases, and it is characterized by the absence of one of several enzymes . These enzymes help the body get rid of a substance normally found outside of our cells called a mucopolysaccharide. This substance is called heparan sulfate, and in Sanfilippo syndrome, large amounts of it are excreted in the urine. Alternative Names: Mucopolysaccharidosis type III (subtypes A - B - C-D); Type IIIA = heparan sulfate sulfatase deficiency; Type IIIB = N-acetylglucosaminidase deficiency; Type IIID = N-acetylglucosamine-6-sulfate sulfatase deficiency Causes, incidence, and risk factors: Sanfilippo syndrome is transmitted as an autosomal recessive trait. It is possibly the most common of the mucopolysaccharide storage diseases. Sanfilippo syndrome has a relatively late onset rather than during the first year of life. It shares, in common with most of the mucopolysaccharide storage diseases, coarse facial features, decreased mental development that progresses to severe mental retardation , stiff joints, gait disturbances, speech disturbances , and behavioral problems.

29. Sanfilippo Syndrome sanfilippo syndrome. Alternative Names Mucopolysaccharidosis TreatmentThere is no specific treatment for sanfilippo syndrome. Specific http://www.pennhealth.com/ency/article/001210trt.htm

Disease Injury Nutrition Poison ... Prevention Sanfilippo syndrome Alternative Names: Mucopolysaccharidosis type III (subtypes A - B - C-D); Type IIIA = heparan sulfate sulfatase deficiency; Type IIIB = N-acetylglucosaminidase deficiency; Type IIID = N-acetylglucosamine-6-sulfate sulfatase deficiency Treatment: There is no specific treatment for Sanfilippo syndrome. Specific complications may respond to conventional treatments as they arise. Support Groups: National MPS Society, Inc. 610-942-0100 www.mpssociety.org Expectations (prognosis): Severe retardation is the most important of the clinical problems. IQs may be below 50. Severe cases lead to death before 20 years of age. In a minority of cases, Sanfilippo is compatible with a normal lifespan. The affected person may develop retinal degeneration leading to blindness , or may have seizures Complications: Blindness Seizures Mental retardation Progressive neurologic disease leading to becoming wheelchair bound Inability to care for self Calling your health care provider: Call your health care provider if your child does not seem to be growing or developing normally.

30. Sanfilippo Syndrome http://www.alifeforelisa.org/SanfilippoSyndrome.html

31. Left home page, home page. Elisa Linton, Elisa Linton. sanfilippo syndrome, SanfilippoSyndrome. Research Update, Research Update. Past Events, Past Events. http://www.alifeforelisa.org/sidebar.html

32. Health Ency.: Disease: Sanfilippo Syndrome sanfilippo syndrome. This substance is called heparan sulfate, and in Sanfilipposyndrome, large amounts of it are excreted in the urine. Causes and Risks. http://www.accessatlanta.com/shared/health/adam/ency/article/001210.html

SEARCH: The Web Yellow Pages HOME AJC.COM Illustrated Health Encyclopedia Important notice Ency. home Disease S Sanfilippo syndrome Overview Symptoms Treatment Prevention Alternative names: Mucopolysaccharidosis type III (subtypes A - B - C-D); Type IIIA = heparan sulfate sulfatase deficiency; Type IIIB = N-acetylglucosaminidase deficiency; Type IIID = N-acetylglucosamine-6-sulfate sulfatase deficiency Definition: Sanfilippo syndrome is one of the hereditary mucopolysaccharide storage diseases, and it is characterized by the absence of one of several enzymes . These enzymes help the body get rid of a substance normally found outside of our cells called a mucopolysaccharide. This substance is called heparan sulfate, and in Sanfilippo syndrome, large amounts of it are excreted in the urine. Causes and Risks Sanfilippo syndrome is transmitted as an autosomal recessive trait. It is possibly the most common of the mucopolysaccharide storage diseases. Sanfilippo syndrome has a relatively late onset rather than during the first year of life. It shares, in common with most of the mucopolysaccharide storage diseases, coarse facial features, decreased mental development that progresses to severe

33. Health Ency.: Disease: Sanfilippo Syndrome sanfilippo syndrome. Prevention. Genetic counseling is recommended forprospective parents with a family history of sanfilippo syndrome. http://www.accessatlanta.com/shared/health/adam/ency/article/001210prv.html

SEARCH: The Web Yellow Pages HOME AJC.COM Illustrated Health Encyclopedia Important notice Ency. home Disease S Sanfilippo syndrome Overview Symptoms Treatment Prevention Alternative names: Mucopolysaccharidosis type III (subtypes A - B - C-D); Type IIIA = heparan sulfate sulfatase deficiency; Type IIIB = N-acetylglucosaminidase deficiency; Type IIID = N-acetylglucosamine-6-sulfate sulfatase deficiency Prevention Genetic counseling is recommended for prospective parents with a family history of Sanfilippo syndrome. Ency. home Disease S Please read this Important notice Also Check Out Subscribe to The Atlanta Journal-Constitution Home Autos Classifieds ... Our Sponsors By using AccessAtlanta.com you accept the terms of our Visitor Agreement . Please read it. Privacy statement Registered site users: edit your profile

34. Qango : Health: Diseases And Conditions: S: Sanfilippo Syndrome category Options Help. Home Health Diseases and Conditions S sanfilippo syndrome, Suggest a Site. Health, etc. If you would http://www.qango.com/dir/Health/Diseases_and_Conditions/S/Sanfilippo_Syndrome/

Chat Forums Free Email Personals Classifieds ... Help Qango Directory Sanfilippo Syndrome all of Qango only this category Options Help Home Health ... S > Sanfilippo Syndrome Suggest a Site Health, etc If you would like to suggest a site for this category please click here Home Health Diseases and Conditions ... S > Sanfilippo Syndrome Suggest a Site Home Suggest a Site Search ... Login

35. Florida State University College Of Medicine Digital Library sanfilippo syndrome Patient/Family Resources. sanfilippo syndrome Accessdocument. Miscellaneous sanfilippo syndrome Patient/Family Resources http://fsumed-dl.slis.ua.edu/patientinfo/metabolism/inborn/lysosomalstorage/muco

Patient/Family Resources by Topic: Metabolic Disorders Sanfilippo Syndrome Patient/Family Resources Spanish Miscellaneous See also: Mental Retardation Patient/Family Resources Genetic Testing Patient/Family Resources General Genetic Disorders Patient/Family Resources General Metabolic Disorders Patient/Family Resources ... Sanfilippo Syndrome Clinical Resources Canadian MPS Society: Homepage MPS and ML Disorders: Table of contents MPS 3 - Sanfilippo Syndrome: Access document Diseases: List of documents Sanfilippo Syndrome: Table of contents MEDLINE plus Medical Encyclopedia: Table of contents Sanfilippo Syndrome: English Spanish Spanish MEDLINE plus Medical Encyclopedia: Table of contents Sanfilippo Syndrome: English Spanish Miscellaneous Sanfilippo Syndrome Patient/Family Resources The Family Village Library - Specific Diagnoses Card Catalog Table of contents Mucopolysaccharidosis: Access document Healthfinder (US DHHS): Homepage Genetics: List of documents National Library of Medicine MEDLINE plus Health Topics: Index Genetic Testing/Counseling: List of documents Genetic Disorders: List of documents YAHOO - Health:Diseases and Conditions:Genetic Disorders Additional Genetic Disorders resources ( These sites have not been reviewed.

36. Florida State University College Of Medicine Digital Library Sandhoff Disease Clinical Resources; Sandhoff Disease Patient/Family Resources;sanfilippo syndrome Clinical Resources (MPS III A, B, C, D); http://fsumed-dl.slis.ua.edu/alpha-index/aa-alpha-individ/s-page.htm

Digital Library Alphabetic Browse All Digital Library Resource Topics Beginning with "S" See also: Clinical Resources A-Z Patient/Family Resources A-Z Preventive Medicine Resources A-Z Public Health Resources A-Z ... Sanfilippo Syndrome Clinical Resources (MPS III A, B, C, D) Sanfilippo Syndrome Patient/Family Resources (MPS III A, B, C, D) Sarcoidosis Clinical Resources Sarcoidosis Patient/Family Resources Scabies Clinical Resources Scabies Patient/Family Resources ... Scheie Syndrome Clinical Resources (MPS I) Scheie Syndrome Patient/Family Resources (MPS I) Schistosomiasis Clinical Resources Schistosomiasis Patient/Family Resources Schizoid Personality Disorder Clinical Resources Schizoid Personality Disorder Patient/Family Resources ... Sly Syndrome Clinical Resources (MPS VII) Sly Syndrome Patient/Family Resources (MPS VII) Small Cell Carcinoma Clinical Resources Small Cell Carcinoma Patient/Family Resources Smallpox Clinical Resources Smallpox Patient/Family Resources ... Florida State University College of Medicine Service provided by the Clinical Digital Libraries Project of the UA and UNT Schools of Library and Information Studies Powered by UA Digital Libraries Navigation Lab technology

37. MPS III sanfilippo.gif (174947 bytes)sanfilippo syndrome is also known as MPSIII. It takes its name from Dr. Sylvester Sanfilippo who was http://www.mpssociety.org.au/mps_iii.htm

Home MPS Society MPS Diseases What's New ... Site Map MPS III - Sanfilippo Characteristics of MPS III Medical Problems of those affected by MPS III Current Research into MPS III Sanfilippo Syndrome is also known as MPS III. It takes its name from Dr. Sylvester Sanfilippo who was one of the doctors in the United States who described the condition in 1963. To date four different enzyme deficiencies have been found to cause Sanfilippo Syndrome and so the condition is described as type A, B, C, or D. These enzymes are: Sanfilippo A Heparan-N-sulphatase Sanfilippo B a -N-Acetylgucosaminidase Sanfilippo C AcetylCoA:N-acetyltransferase Sanfilippo D N-Acetylglucosamine 6-sulphatase There is usually very little difference between the four types of the disorder but there have been some very mild cases of the B form where the affected individuals have remained relatively healthy into adult life. The latest understanding is that some people seem to produce some enzyme activity which helps to slow down the progression of the disorder whilst those with more severe symptoms appear to have no enzyme activity (or function) at all. It is important to understand that all those with Sanfilippo syndrome have the same condition, even if some have a milder form. The combined incidence of Sanfilippo syndrome is 1 in 66,000, however each of the particular types is rarer again. The Australian prevalence of MPS IIIA is 1 in 114,000, MPS IIIB is 1 in 211,000, MPS IIIC is 1 in 1,407,000 and MPS IIID is 1 in 1,056,000.

38. Table Of Diseases Mucopolysaccharidosis type IIIA. sanfilippo syndrome A. HeparanN-sulphatase. Mucopolysaccharidosistype IIIB. sanfilippo syndrome B. aN-Acetylglucosaminidase. 17q21. http://www.mpssociety.org.au/table_of_diseases.htm

Home MPS Society MPS Diseases What's New ... Site Map Table of MPS and Related Diseases The following is a summary of some of the Lysosomal Storage Diseases (LSD) and availability of therapies. This table is adapted from the LDA newsletter dated November 2000 and the full version can be found on the website of Lysosomal Diseases Australia. Clicking on any of the hyperlinks will either take you to a page containing further information on the disease on this site, or if such information is not available on this site, will take you to a different website specifically addressing that particularly disease or condition. Those websites are not related to this site and no responsibility is taken for the content of those sites or anything related to use of those sites. MPS DISEASES (in alphabetical order) CLINICAL PHENOTYPE ENZYME DEFICIENCY CHROMOSOME LOCATION BONE MARROW TRANSPLANTATION ANIMAL MODEL HUMAN ERT AUSTRALIAN PREVALENCE CARRIER FREQUENCY Mucolipidosis type I Sialidosis types I and II Neuaminidase 1 in 1027 Mucolipidosis types II and III I-Cell Disease Pseudo-Hurler Polydystroph y Phosphotransferase Benefit reported for one ML II patient cat 1 in 325,000

39. Mucopolysaccharidosis Type of MPS Mucopolysaccharidosis; Mucolipidosis; Hunter Syndrome; HurlerSyndrome; MaroteauxLamy Syndrome; sanfilippo syndrome; Scheie Syndrome. http://www.familyvillage.wisc.edu/lib_muco.htm

Mucopolysaccharidosis Type of MPS: Mucopolysaccharidosis; Mucolipidosis; Hunter Syndrome; Hurler Syndrome; Maroteaux-Lamy Syndrome; Sanfilippo Syndrome; Scheie Syndrome Who to Contact Where to Go to Chat with Others Learn More About It Web Sites ... Search AltaVista for "Mucopolysaccharidosis" Who to Contact National MPS Society, Inc. 17 Kraemer Street Hicksville, NY 11801 Fax: (410) 538-4964 Where to Go to Chat with Others MPS Discussion Room A forum for parents, medical personnel, and others to discuss the MPS family of inherited diseases. Learn More About It Hunter Syndrome information from OMIM Hunter Syndrome information from Ped Base Hurler Syndrome information from OMIM Hurler Syndrome information from Ped Base ... History of Knowledge of MPS Diseases Web Sites The National MPS Society The Canadian MPS Society Back to [ M - N Family Village Home Library Coffee Shop ... Information Last Updated March 4, 1999 by familyvillage@waisman.wisc.edu Document Source: http://www.familyvillage.wisc.edu/lib_muco.htm

40. Nutritional And Metabolic Diseases About the sanfilippo syndrome (MPS III) MPS Society (US); About Mucopolysaccharidosis(MPS) I / Hurler-Scheie Syndrome, Mucopolysaccharidosis II / Hunter http://www.mic.ki.se/Diseases/c18.html

search help staff Nutritional and Metabolic Diseases Patients and laypersons looking for guidance among the target sources of this collection of links are strongly advised to review the information retrieved with their professional health care provider. Alphabetical List of Diseases Search PubMed at NCBI/NLM FDA Center for - (US) International Union of Nutritional Sciences - (AU) The Nutrition Navigator (rating guide) at Tufts University The USDA Nutrient Database for Standard Reference, rel 13 - (US) Nutritional Analysis Tool, ver 2.0 - U of Illinois (US) About some Diagnostic Tests Used in Evaluation of Malabsorption www.FoodSafety.gov Food Safety including a list of Organisms of concern - N Carolina Coop. Ext. Serv. (US) About Food Irradiation - BFE (DE) Facts about Food Irradiation - IAEA (AT) The British Nutrition Foundation Int'l Food Information Council , including a page on Food Additives , and Food Color Facts , and a Glossary of Food-Related Terms About Glutamate and Monosodium Glutamate - IFIC On Antioxidants and some questions/answers re Selenium G Combs ] - Cornell Cooperative Extension Facts about some dietary supplements - NIH Clinical Center (US) About Functional Food A Dowden ] - (UK) Epicurious Dictionary of Food The American Dietetic Association , and their position on Vegetarian Diets The Water FAQ - SoftWater.Com (US)

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