61. Kaiser Denies 2 Siblings Access To Life-Prolonging Care The Bennett's three children Tommy, Hunter and Ciara 2,4, and 6 years old suffer from a rare condition known as sanfilippo syndrome, which causes http://www.consumerwatchdog.org/healthcare/pr/pr002706.php3

Home Volunteer Donate Subscribe ... Casualty of the Day OTHER TOPICS Corporate Accountability Insurance Citizen Advocacy The Justice System ... press releases NEWS RELEASE Sep 04, 2002 CONTACT: Jerry Flanagan 415-633-1320 or 415-305-5890 cell Kaiser Denies 2 Siblings Access To Life-Prolonging Care Phone Campaign Announced - Call Kaiser: "Please Pay the Bennetts' Benefits" - TV and Talk-Radio Hosts: Urge Listeners to Call Kaiser OAKLAND, CA. KAISER PERMANENTE HEADQUARTERS All three of John and Alicia Bennett's children have been diagnosed with a fatal genetic disorder. The northern California couples' HMO, Kaiser Permanente, has denied coverage for a treatment that costs $600,000 for each child which may delay the effects of the disease and lengthen and improve the quality of the children's lives. Other insurers have already provided coverage for the treatment. The Foundation for Taxpayer and Consumer Rights announced today a phone campaign urging Americans to call Kaiser to 'Please Pay for the Bennetts' Benefits.' FTCR also asked TV and radio talk show hosts to advise audiences to call Kaiser's corporate headquarters in Oakland California. Nurses representing the California Nurses Association advocated for health care providers and patients to get involved in the effort to save the Bennett children. "In the most advance nation in the world, the lives of two insured children should not depend upon the generosity of strangers, car washes, and fundraisers," said Jerry Flanagan of the Foundation for Taxpayer and Consumer Rights. "The public can help by calling Kaiser and asking them to review the basis for their current decision and 'Please Pay the Bennetts' Benefits.'"

62. Kaiser Permanente Agrees To Contribute $1 Million To Provide Treatment For The B benefits. Bennett's three children Tommy, Hunter and Ciara 2,4, and 6 yearsold suffer from a rare condition known as sanfilippo syndrome, which causes http://www.consumerwatchdog.org/healthcare/pr/pr002707.php3

Home Volunteer Donate Subscribe ... Casualty of the Day OTHER TOPICS Corporate Accountability Insurance Citizen Advocacy The Justice System ... press releases NEWS RELEASE Sep 04, 2002 CONTACT: Jerry Flanagan - 415-633-1320 or 415-305-5890 Kaiser Permanente Agrees to Contribute $1 million to Provide Treatment for the Bennett Children Health Insurer Announces Decision Moments Before FTCR Holds a Press Conference at Kaiser Headquarters OAKLAND, CA. KAISER PEMANENTE NATIONAL HEADQUARTERS Kaiser Permanente announced its decision to provide a $1 million dollar research grant to Duke University to provide treatment for two children with a rare genetic disorder. FTCR commended Kaiser for the decision delivered to FTCR's Jerry Flanagan and the Bennett family moments before a press conference at the health insurer's headquarters was scheduled to begin. After an impromptu meeting inside the Kaiser headquarters with consumer advocates, senior Kaiser officials, and Bennett family, the emotional and relieved parents announced the Kaiser decision to reporters waiting outside. "Kaiser should be congratulated for providing the Bennett children Tommy and Hunter - the chance to live. This is a step in the right direction for the state's largest insurer," said Jerry Flanagan, Consumer Advocate for the Foundation for Taxpayer and Consumer Rights. "The fact the Bennett children would have been granted care if they had been enrolled with another insurer means that the state legislature must enact changes that make certain that all California patients have access to comprehensive health care benefits."

63. Directory :: Look.com sanfilippo syndrome (4) MPS III sanfilippo syndrome Information, including thecauses, different forms, the inheritance and how the disorder progresses. http://www.look.com/searchroute/directorysearch.asp?p=591642

64. BC-Faculty Yu, WH, Zhao, KW, Ryazantsev, S., Rozengurt, N., Neufeld, EF (2000) Shorttermenzyme replacement in the murine model of sanfilippo syndrome type B. Mol. http://research.mednet.ucla.edu/Departments/bc_faculty.CFM?FacultyKey=93

65. Health Ency.: Disease: Sanfilippo Syndrome sanfilippo syndrome. There is no specific treatment for sanfilippo syndrome. Specificcomplications may respond to conventional treatments as they arise. http://www.austin360.com/shared/health/adam/ency/article/001210trt.html

SEARCH: The Web Yellow Pages HOME 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 Treatment There is no specific treatment for Sanfilippo syndrome. Specific complications may respond to conventional treatments as they arise. 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 Call Your Health Care Provider If: Call your health care provider if your child does not seem to be growing or developing normally.

66. Health Ency.: Disease: Sanfilippo Syndrome sanfilippo syndrome. Symptoms. Family history of sanfilippo syndrome; May havenormal growth during first few years, but final height is below average; http://www.austin360.com/shared/health/adam/ency/article/001210sym.html

SEARCH: The Web Yellow Pages HOME 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 Symptoms Family history of Sanfilippo syndrome May have normal growth during first few years, but final height is below average Delayed development followed by deteriorating mental status Deterioration of gait Coarse facial features Full lips Heavy eyebrows that meet in the middle of the face above the nose Diarrhea Stiff joints that may not extend fully Signs and Tests Hepatomegaly (liver enlargement) Splenomegaly (spleen enlargement) Corneas clear Echocardiogram may show thickened heart Abnormal bone x-rays such as thickened skull and oval vertebrae Seizures, mental retardation Activities of one of the above enzymes may be low in fibroblast skin cells Urine may have increased heparan sulfate Abnormal pathological staining character of white blood cells called metachromasia Ency. home

67. Sanfilippo Syndrome sanfilippo syndrome. Alternate Names Mucopolysaccharidosis Causes and Risks Sanfilipposyndrome is transmitted as an autosomal recessive trait. It is possibly http://www.rwjuhh.net/Atoz/encyclopedia/article/001210.asp

For a complete list of hospital classes and events, click here to connect to HealthConnection Online Medical Encyclopedia Encyclopedia Disease S -> Sanfilippo syndrome Sanfilippo syndrome Alternate Names: Mucopolysaccharidosis III (A - B - C) 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 mental retardation , stiff joints, gait disturbances, speech disturbances , and behavioral problems. Unlike Hurler syndrome the cornea is clear, the condition is not as unrelenting, and survival times are longer, often into the twenties or later. Prevention: Genetic counseling is recommended for prospective parents with a family history of Sanfilippo syndrome. Symptoms: family history of Sanfilippo syndrome may have normal growth during first few years but final height is below average delayed development followed by deteriorating mental status deterioration of gait coarse facial features full lips heavy eyebrows Signs and Tests: hepatomegaly corneas clear Treatment: There is no specific treatment for Sanfilippo syndrome.

68. NTvT - September 1998 324325. A Visser A Vissink, SYNDROMES 4 THE sanfilippo syndrome. TOP OF PAGE. ORIGINALABSTRACT. A Visser A Vissink, SYNDROMES 4 THE sanfilippo syndrome Summary. http://www.ntvt.nl/entt09_98.htm

var code = " "; document.write(code); SEPTEMBER 1998 SUMMARY NTvT 1998 date page author title September Vol.105: G Delanghe C Bollen D van Steenberghe L Feenstra Contents HALITOSIS, FOETOR EX ORE WH Van Palenstein Helderman ASSESSMENT OF CARIES ACTIVITY AND CARIES RISK KGH van der Wal JGAM de Visscher NUMB CHIN SYNDROME A Visser A Vissink SYNDROMES 4 THE SANFILIPPO SYNDROME ORIGINAL ABSTRACT G Delanghe C Bollen D van Steenberghe L Feenstra HALITOSIS, FOETOR EX ORE Summery. OBJECTIVE. To review the results of a multidisciplinary approach on halitosis. DESIGN. Descriptive. SETTING. University Hospital Leuven, Belgium. METHODS. Review of the data on etiology, diagnosis and therapy of halitosis, obtained by a multidisciplinary team consisting of ENT specialists, periodontologists and a psychiatrist. Malodour was confirmed by a halimeter. RESULTS. 491 patients, equally males and females, with a concentration between 20 and 50 years of age were seen. Oral causes (87%) were due to tongue coating (51%), gingivitis (17%), periodontitis (15%) or combinations (17%). The other 13% causes were due to ENT-related problems (4%), both ENT and oral (3%), digestive tract (1%) and presumed psychic (5%). CONCLUSION. Halitosis is a rather unknown medical problem that often can be solved by a multidisciplinary approach. NTvT 1998;

69. Error Page Included disease(s) sanfilippo syndrome type A (Mucopolysaccharidose type 3A)sanfilippo syndrome type B (Mucopolysaccharidose type 3B) sanfilippo syndrome http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=581

70. Orthopaedic Syndromes First Page Sacral agenesis syndrome; SaethreChotzen syndrome; Saethre-Chotzensyndrome 2; sanfilippo syndrome, type A; sanfilippo syndrome, type http://freeortho.com/syndromes.html

Orthopaedic Related Syndromes Orthopaedic related syndromes are listed below in alphabetical order. Click on the syndromes for further details: A B C D ... H I J K L M ... P Q R S T U V W X Y Z OMIM Database ALL Syndromes - Clinical Features University of Western Ontario - Paediatric Database Gene maping and Other details: Achondrogenesis Ib Achondrogenesis-hypochondrogenesis, type II Achondroplasia Acrocallosal syndrome ... XLA and isolated growth hormone deficiency

71. Listings Of The World Health Conditions And Diseases Genetic Listings World Health Conditions and Diseases Genetic Disorderssanfilippo syndrome. Listings World, Over 2 million http://listingsworld.com/Health/Conditions_and_Diseases/Genetic_Disorders/Sanfil

72. Sanfilippo Syndrome sanfilippo syndrome. This substance is called heparan sulfate, and in Sanfilipposyndrome, large amounts of it are excreted in the urine. Alternative Names http://www.umm.edu/ency/article/001210.htm

Disease Nutrition Surgery Symptoms Injury ... Z Related Programs at UM Medical Center Maryland Heart Center Department of Orthopaedics Home Medical Reference ... Encyclopedia (English) Toggle English Spanish Sanfilippo syndrome Overview Symptoms Treatment Prevention 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

73. Untitled Document sanfilippo syndrome. Sanfilippo sanfilippo syndrome can be caused bya deficiency of any one of four distinct lysosomal enzymes. The http://www.health.wits.ac.za/gen/genet_disorders_linsks-z.htm

Sanfilippo syndrome Sanfilippo syndrome results from an inherited inability to degrade heparan sulphate, a complex carbohydrate that forms part of connective tissue. The disease has an autosomal recessive mode of inheritance. Physical abnormalities associated with this condition are less pronounced than those observed with other mucopolysaccharidoses, but the mental retardation is usually more severe. Sanfilippo syndrome can be caused by a deficiency of any one of four distinct lysosomal enzymes. The urine from affected individuals contains increased levels of partly-degraded heparan sulphate which, when observed, suggests the diagnosis. A definitive diagnosis requires the demonstration of a deficiency of one of the four enzymes involved in heparan sulphate degradation. At present, our laboratory can only assay one of the four enzymes viz. that which is deficient in Sanfilippo type B. Sample required: Approximately 30ml of freshly-collected urine and 13ml of whole blood (i.e. 6.5ml drawn into two yellow-capped vacutainer tubes, containing ACD anticoagulant), to reach the laboratory within 24 hours of collection. Time required for results to be ready: Approximately one week Contact telephone number: Scoline apnoea Scoline apnoea refers to the prolonged period taken by a patient to regain the ability to breath after being given a standard dose of the muscle relaxant, scoline, during surgery. The propensity to have the condition is inherited in an autosomal recessive manner. Scoline apnoea is more common in Caucasians because of the increased frequency of the so-called atypical variant of the gene in this group. Individuals at risk, as well as carriers of Scoline apnoea, can be identified by assaying and characterising (dibucane and fluoride numbers) the butyryl cholinesterase present in their serum. Individuals at risk are advised to wear a bracelet with a message alerting health care workers to the danger of administering scoline.

74. Sanfilippo Disease/Syndrome (Mucopolysaccharidosis, Type III) HOME Sanfilippo Disease/Syndrome (Mucopolysaccharidosis, Type III). sanfilippo syndromeA,B,C,D; AcétylCoA alpha-glucosaminide-N-acetyl transferase deficiency; http://www.bdid.com/sanfilippo.htm

HOME Sanfilippo Disease/Syndrome (Mucopolysaccharidosis, Type III) Sanfilippo Syndrome A,B,C,D Type A MUCOPOLYSACCHARIDOSIS TYPE IIIA SANFILIPPO A SYNDROME Type B MUCOPOLYSACCHARIDOSIS TYPE IIIB Type C MUCOPOLYSACCHARIDOSIS TYPE IIIC Type D MUCOPOLYSACCHARIDOSIS TYPE IIID HOME

75. 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.northarundel.com/ency/article/001210.htm

Disease Nutrition Surgery Symptoms Injury ... Z Related Programs at North Arundel Hospital Maryland Vascular Center Orthopaedic Services Home Medical Reference ... Encyclopedia (English) Toggle English Spanish Sanfilippo syndrome Overview Symptoms Treatment Prevention 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

76. JAX Mice Database - Mouse Models List migraine, familial hemiplegic; with progressive cerebellar ataxia; mucopolysaccharidosisIII B, sanfilippo syndrome B; mucopolysaccharidosis http://jaxmice.jax.org/jaxmicedb/html/sbmodel_974.shtml

Mice Orders Services Strain Information Research Models ... E-Mail Alerts Mouse Model Lists Mouse/Human Gene Homologs All Mouse/Human Gene Homologs Strains Alport syndrome Alzheimer's Bruton agammaglobulinemia tyrosine kinase ... The Jackson Laboratory

77. Help Our Girls Khansa Noor. 4 Years old. Tayyaba and Zarrar Beg's three little girlsAbeerah(6), Khansa (4) and Zahra (2) have been diagnosed with sanfilippo syndrome. http://www.helpourgirls.com/

Help Our Girls Help Our Girls SanFilippo? Media EVENTS ... Journal ***SPECIAL REPORT*** Abeerah and Khansa had been removed from their school's attendance roster through the blatant neglect of the Teaneck Board of Education's Special Ed Department. They have chosen to ignore our daughters, their professional responsibilities and above all the laws of the State of New Jersey. More details can be found in the Journal. Today Marks day 106 since Dec. 16th 2002 the day they were informed of their neglect of their responsibilities to our daughters. (They are in need of physical, speech and occupational therapy, each day without, has and will cause irreparable harm) Please Note: We have returned from Durham, NC. Please check our journal enteries to keep updated. Many of our visitors have asked for info as to where to send donations, we have changed our page design to enable easy viewing of our navigation bar (now on the left of this page) select where it says donations and it will take you to the Donation page and the various options available. (click below) Daily Journal What would you do if 3 of your children had a fatal illness?

78. Ciara's Sunshine Foundation - Welcome one recently discovered that all three of their children from left, 4year-oldHunter, 2-year-old Tommy and 5-year-old Ciara have sanfilippo syndrome. http://www.goldrush.com/~wlverine/ciara/

Facing the future together The Bennett family struggles to cope as all three children have a rare, deadly disease John and Alicia Bennett of I one recently discovered that all three of their children from left, 4-year-old Hunter, 2-year-old Tommy and 5-year-old Ciara have Sanfilippo syndrome. About one in 70,000 babies is afflicted with the genetic disorder, which usually leads to pre-teenage death. The Bennetts are hoping new medical techniques will help their offspring. Sacramento Bee/Anne Chadwick Williams FULL ARTICLE By Cynthia Hubert Bee Staff Writer Published 2:15 a.m. PDT Wednesday, May 29, 2002 http://www.sacbee.com *** View the original article About Ciara Ciara is a beautiful 6 year old who was recently diagnosed with Sanfilippo Syndrome. Sanfilippo Syndrome is a mucopolysaccharide disorder and is also known as MPS-III. MPS-III children are missing an enzyme which is essential in the breakdown of the sugar molecules in their bodies. The incomplete broken down sugars remain stored in the cells in the body causing progressive damage. MPS-III is a very rare disorder and only 24,000 babies a year are born with it. Children with Sanfilippo usually don't live past the age of 10-15 years old. At present there is no cure, various experimental methods have been used to try to replace the missing enzyme, but none so fare have been of any long-term benefit.

79. A Heartfelt Presentation LanguageHearing Association meeting in Boston, Massachusetts, and present a “ACase Study of Language Development in sanfilippo syndrome.” This paper was http://srjarchives.tripod.com/1998-04/Heart.htm

Get Five DVDs for $.49 each. Join now. Tell me when this page is updated A Heartfelt Presentation Carol L. Roberts, M.A., CCC–SLP In November 1997, Laurie Freundschuh, a Scottish Rite Speech/Language Pathologist, was invited to attend the annual American Speech-Language-Hearing Association meeting in Boston, Massachusetts, and present a “A Case Study of Language Development in Sanfilippo Syndrome.” This paper was co-authored by Lavonne Levar, Clinic Coordinator at the Robert F. Pierce Clinic at University of Minnesota–Duluth. Laurie was instrumental in the diagnosis of Sanfilippo syndrome for a child, Sara (pictured right), who attends the Scottish Rite Clinic. Sara has been coming to the clinic since she was three years old. She is now six. Sanfilippo syndrome is a rare genetic disease (1 out of 24,000 births) caused by just one mutated gene which controls the enzyme that breaks down a body sugar called heparan sulfate. As a result, unprocessed sugar builds up to poison cells in the brain, a condition that eventually causes death by the time the person affected is in his or her late teens. Tragically, this illness will slowly destroy Sara’s ability to function. For three years, Laurie has been working against the clock to give Sara the language she needs to communicate with her family and friends. Right now Sara uses complete sentences to communicate her needs. Knowing the future means Sara will lose many acquired skills, including expressive speech and language skills, Laurie has designed a system of communication using a picture book that Sara uses now just for fun.

80. Sam - Sex http//www.icondata.com/health/pedbase/pedlynx.htm. sanfilippo syndrome. http//webmd.lycos.com/adam/asset/adam_disease_articles/a_to_z/s.sanfilippo syndrome. http://www.healthmednet.com/Sam - Sex.htm

Sam - Sex samonellosis http://www.healthanswers.com/patco/videos_main.asp San Filippo Syndrome San Filippo Syndrome http://www.webcrawler.com/health/diseases_and_conditions/conditions_a_z/conditions_s San Filippo Syndrome San Joaquin fever http://content.health.msn.com/encyclopedia San Joaquin Fever http://www.drkoop.com/conditions/encyclopedia/index/s.asp san joaquin valley fever http://webmd.lycos.com/adam/asset/adam_disease_articles/a_to_z/s San Joaquin Valley Fever http://www.healthanswers.com/patco/videos_main.asp San Joaquin Valley Fever@ http://dmoz.org/Health/Conditions_and_Diseases/ SANDHOFF DISEASE http://www.icondata.com/health/pedbase/pedlynx.htm Sandhoff Disease http://www.ninds.nih.gov/health_and_medical/disorder_index.htm Sandhoff Disease SANFILIPPO A SYNDROME http://www.icondata.com/health/pedbase/pedlynx.htm sanfilippo syndrome http://webmd.lycos.com/adam/asset/adam_disease_articles/a_to_z/s Sanfilippo Syndrome Sanfilippo Syndrome@ http://dmoz.org/Health/Conditions_and_Diseases/ Sanfillippo Syndrome http://www.familyvillage.wisc.edu/card_st.htm

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