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Maroteaux Lamy Syndrome
NORD is very grateful to Roberto Giugliani, MD, PhD, MSc, Serviço de Genética Médica, Hospital de Clínicas de Porto Alegre, Brazil, for assistance in the preparation of this report.
Synonyms of Maroteaux Lamy Syndrome
- Arylsulfatase-B Deficiency
- MPS type VI
- Mucopolysaccharidosis type VI
- Polydystrophic Dwarfism
Disorder Subdivisions
- No subdivisions found.
General Discussion
Maroteaux-Lamy syndrome (mucopolysaccharidosis type VI; MPS VI) is a rare genetic disorder characterized by complete or partial lack of activity of the enzyme arylsulfatase B (also called N-acetylgalactosamine-4-sulfatase). Deficiency or absence of this enzyme activity leads to the accumulation of complex carbohydrates called glycosaminoglycans (previously known as mucopolysaccharides) in the body. Abnormal accumulation of mucopolysaccharides leads to progressive involvement of multiple organ systems. The symptoms and severity of Maroteaux-Lamy syndrome can vary dramatically from one person to another; some individuals only develop mild symptoms, while others develop severe, even life-threatening complications. Common symptoms can include coarse facial features, corneal clouding, joint abnormalities, various skeletal malformations, an abnormally enlarged liver and/or spleen (hepatosplenomegaly), and hearing loss. Cardiac disease and restrictive pulmonary disease can also occur. Intelligence is usually not affected. In 2005, the Food and Drug Administration (FDA) approved the enzyme replacement therapy known as Naglazyme® for the treatment of Maroteaux-Lamy syndrome. Maroteaux-Lamy syndrome occurs due to mutations in the ARSB gene and is inherited as an autosomal recessive disorder.
The mucopolysaccharidoses (MPS) are a group of inherited lysosomal storage disorders. More than 50 lysosomal storage disorders have been identified so far. Lysosomes function as the primary digestive units within cells. Enzymes within lysosomes break down or digest particular metabolites, such as certain carbohydrates and fats. In individuals with MPS disorders, deficiency or malfunction of specific lysosomal enzymes leads to an abnormal accumulation of certain complex carbohydrates known as mucopolysaccharides or glycosaminoglycans in the arteries, skeleton, eyes, joints, ears, skin, and/or teeth. These accumulations may also be found in the respiratory system, liver, spleen, central nervous system, blood, and bone marrow. This accumulation eventually causes progressive damage to cells, tissues, and various organ systems of the body. There are several different types and subtypes of MPS. These disorders, with one exception (MPS type II), are inherited in an autosomal recessive manner. Maroteaux-Lamy syndrome was named from the two French physicians who first described this disorder in the medical literature in 1963.
The symptoms, onset and rate of progression of Maroteaux-Lamy syndrome vary greatly from one person to another. The disorder can be thought of as a spectrum or continuum of disease. Some individuals may only have a few symptoms and others may have serious symptoms affecting several different organ systems simultaneously. Maroteaux-Lamy syndrome can potentially cause life-threatening complications. Some individuals will have severe symptoms during infancy, while others have slowly progressive symptoms that develop over the course of multiple decades.
The variable nature of Maroteaux-Lamy syndrome means that most affected individuals will not have all of the symptoms potentially associated with the disorder. Individuals with this disorder can differ from one another dramatically. Parents should talk to their children's physician and medical team about their child's specific case, associated symptoms and overall prognosis. Most affected individuals come to medical attention during middle childhood.
Rapidly progressive Maroteaux-Lamy syndrome is associated with an onset before three years of age. Affected individuals may develop walking problems (impaired mobility) by the age of 10 and experience delayed or absence of puberty. These individuals may be at risk of heart failure by second or third decades of life.
Slowly progressive disease is characterized by later onset. A diagnosis is usually obtained after five years of age, most often during the second or third decade. Despite a slower progression, individuals may still develop a decrease in overall function and ability by their late teen-aged years. Most individuals with Maroteaux-Lamy syndrome will develop serious complications at some point such as joint degeneration, cardiovascular disease, reduced pulmonary function or sleep apnea.
Intelligence is usually not affected in Maroteaux-Lamy syndrome. However, learning difficulties may be present as a consequence of other problems associated with the disorder (e.g., hearing loss).
Affected individuals often exhibit short stature due to growth restrictions. Short stature is described as disproportionate because the trunk may be shorter than the legs. In severe cases, final height may be under 4 feet (120 centimeters). Degenerative joint disease is also common and can lead to the development of multiple joint contractures. A contracture occurs when thickening or shortening of tissue such as muscle fibers cause deformity and restrict the movement of an affected joint.
Individuals with Maroteaux-Lamy syndrome may be described as having 'dysostosis multiplex' a group of skeletal abnormalities that can be seen on x-ray examination. These abnormalities include thickened, short bones of the palm of the hands (metacarpals), underdeveloped (hypoplastic) and irregular wrist bones (carpal bones), abnormal ankle bones (tarsal bones), malformation (dysplasia) of the head of the thighbone (dysplastic femoral head), severe malformation of the hip, abnormalities of the ribs and spine, thickened collarbones (clavicles), and underdevelopment of the bones of the forearm (ulna and radius). Additional skeletal malformations may include a prominent breastbone (pectus carinatum), abnormal curvature of the spine, and knock-knees (genu valgum).
Skeletal malformations can be associated with a variety of complications. Affected individuals may develop pain, especially of the joints and hip, spinal cord compression, an abnormal manner of walking (gait), or difficulty walking. Affected joints may have a limited range of motion making daily tasks difficult. For example, the ability to fully move the shoulders may make simple tasks such as putting on a shirt or combing hair difficult.
Distinctive facial features usually do not occur in individuals with mild forms of the disorder. Individuals with severe forms often share distinctive facial characteristics and these individuals may resemble one another in facial appearance. Such characteristics include chubby faces, thickened lips due to the overgrowth of the gums (gingival hypertrophy), an unusually prominent forehead (frontal bossing), and a broad, flattened bridge of the nose. In some cases, the tongue may be enlarged (macroglossia). Abnormal growth of hair on the face or the body may also occur (hirsutism). Some individuals have a short, stiff neck.
Clouding (opacity) of the thin transparent covering of the front of the eye (cornea) may also occur. If corneal clouding is severe the patient may present vision loss, particularly in dim light. Some individuals may sensitive to bright lights. If the nerve-rich lining the back of the eyes (retina) is involved, affected individuals may have reduced peripheral vision or develop night blindness. In some cases, increased pressure within the eye (glaucoma) may also develop. Increased intraocular pressure may cause swelling of the optic disc (papilledema). Less commonly, additional eye abnormalities may occur including degeneration of the nerve that transmits visual information from the retina to the brain (optic nerve atrophy).
Affected individuals may experience chronic watery, mucous discharge from nose (rhinorrhea), frequent sinus infections, and middle ear infections (otitis media). Hearing loss is common. Hearing loss may be due to failure of sound to be conducted from the outer ear trough the eardrum and tiny bones of the middle ear (conductive hearing loss) or may be due to damage to the inner ear or the nerves that transmit sound from the inner ear to the brain (sensorineural). In rare cases, hearing loss may be due to a combination of both problems (mixed hearing loss).
Abnormalities of the heart are common in children with Maroteaux-Lamy syndrome. Symptoms associated with heart disease can include breathlessness, cough, wheezing, excessive sweating and recurrent chest infections. Affected children may also exhibit failure to thrive and difficulty feeding. High blood pressure (hypertension) is also common. Cardiac abnormalities can include narrowing (stenosis) and insufficiency of certain valves of the heart including the aortic, the mitral, and the tricuspid valves. Heart valves ensure that blood flows in only one direction within the heart. When a valve is damaged or malformed, blood can flow backward from one chamber back into another. Slowly progressive valvar heart disease can be present for years without causing symptoms. Eventually, valvar heart disease can cause a heart murmur. Narrowing of the heat valves can progressively make it more difficult for the heart to pump blood and can eventually result in heart failure.
Additional heart abnormalities can include disease or weakening of the heart muscle (cardiomyopathy) and endocardial fibroelastosis. Cardiomyopathy can be associated with a progressive inability to pump blood, fatigue, heart block, and irregular heartbeats (tachycardia). Endocardial fibroelastosis is a condition characterized by thickening of the endocardium of the ventricles. The endocardium is the innermost layer of tissue that surrounds the heart. These conditions can make it more difficult for the heart to pump blood effectively and can eventually cause heart failure and sudden cardiac death.
The lungs and other parts of the pulmonary system may be affected in some cases. The storage of mucopolysaccharides may cause affected tissue to swell, which can obstruct various airways in the body, resulting in a high-pitched, loud respiratory sound (stridor) and airway compromise. Thick, mucous secretions can further clog the airways. The chest may become rigid, preventing the lungs from taking in sufficient amounts of air. Obstructive and restrictive lung disease can cause breathlessness, reduced endurance, recurrent episodes of pneumonia, and/or sleep apnea. Some affected infants have abnormal softening and weakening of the cartilage of the trachea (windpipe) so that the walls of the trachea are floppy instead of rigid (tracheomalacia). This is often mild, but can be severe, leading to collapse of the air passage. Tracheomalacia can contribute to breathing difficulties and may precipitate respiratory arrest. In some cases, the tonsils and adenoids may become enlarged narrowing the airway in the throat and contributing to breathing difficulties.
Abnormal enlargement of the liver (hepatomegaly) is common in individuals with Maroteaux-Lamy syndrome. Less often, the spleen may also be enlarged (splenomegaly). Hernias, conditions in which the abdominal membrane or contents protrude through a weak point in the abdominal wall, are also common. Umbilical hernias occur when the contents protrude from behind the bellybutton; inguinal hernias occur in the groin area. Some affected individuals have a protruding or bulging abdomen because of weakened muscles and/or hepatosplenomegaly.
Some affected individuals may develop hydrocephalus, a condition in which the accumulation of excess cerebrospinal fluid in the skull causes increased pressure on the brain, potentially causing a variety of symptoms.
Another common symptom associated with Maroteaux-Lamy syndrome is carpal tunnel syndrome, a condition caused by compression of a nerve running through the wrist. Symptoms usually begin as chronic tingling, burning or numbness in the wrist. Eventually, it can progress to cause sharp, piercing pain. Less often, tarsal tunnel syndrome, a similar condition affecting the ankle, may also occur.
Certain gastrointestinal symptoms including loose stools, diarrhea, or severe constipation have also been reported in individuals with Maroteaux-Lamy syndrome.
Maroteaux-Lamy syndrome is caused by mutations in the ARSB gene. Genes provide instructions for making proteins that play a critical role in many functions of the body. When a mutation of a gene occurs, the protein product may be faulty, inefficient, or absent. Depending upon the functions of the particular protein, this can affect many organ systems of the body.
Investigators have determined that the ARSB gene is located on the long arm (q) of chromosome 5 (5q13-q14). Chromosomes, which are present in the nucleus of human cells, carry the genetic information for each individual. Human body cells normally have 46 chromosomes. Pairs of human chromosomes are numbered from 1 through 22 and the sex chromosomes are designated X and Y. Males have one X and one Y chromosome and females have two X chromosomes. Each chromosome has a short arm designated "p" and a long arm designated "q". Chromosomes are further sub-divided into many bands that are numbered. For example, "chromosome 5q13-q14" refers to bands 13-14 on the long arm of chromosome 5. The numbered bands specify the location of the thousands of genes that are present on each chromosome.
The ARSB gene is related to (encodes) the lysosomal enzyme arylsulfatase B. Deficiency of this enzyme results in the accumulation of dermatan sulfate, a type of mucopolysaccharide, in the cells of various tissues of the body. More than 130 different mutations in the ARSB gene have been identified. Certain mutations are more likely to be associated with specific symptoms and/or severity (genotype-phenotype correlation).
The ARSB mutation is inherited as an autosomal recessive disorder. Genetic diseases are determined by the combination of genes for a particular trait that are on the chromosomes received from the father and the mother. Recessive genetic disorders occur when an individual inherits the same abnormal gene for the same trait from each parent. If an individual receives one normal copy of the gene and one mutation that causes the disease, the person will be a carrier for the disease, but usually will not show symptoms. The risk for two carrier parents to both pass the defective gene and, therefore, have an affected child is 25% in each pregnancy. The risk to have a child who is a carrier like the parents is 50% in each pregnancy. The chance for a child to receive normal genes from both parents and be genetically normal for that particular trait is 25%. The risk is the same for males and females.
Affected Populations
Maroteaux-Lamy syndrome affects males and females in equal proportion. The exact incidence and prevalence of the disorder is unknown. The prevalence of all forms of MPS is estimated to be from one in 43,261 to one in 1,505,160 births. However, because MPS disorders, especially milder forms, often go unrecognized, these disorders are underdiagnosed or misdiagnosed, making it difficult to determine their true frequency in the general population.
Related Disorders
Symptoms of the following disorders can be similar to those of Maroteaux-Lamy syndrome. Comparisons may be useful for a differential diagnosis.
Scheie syndrome (mucopolysaccharidosis type I-S; MPS 1-S) is the mildest form of mucopolysaccharidosis. As in Hurler syndrome, individuals with Scheie syndrome have a deficiency of the enzyme alpha-L-iduronidase. Individuals with Scheie syndrome have normal intelligence, height, and life expectancy. Symptoms include stiff joints, carpal tunnel syndrome, backward flow of blood into the heart (aortic regurgitation), and corneal clouding that may result in the loss of visual acuity. The onset of symptoms in individuals with Scheie syndrome usually occurs around the age of five. (For more information on this disorder, choose "Scheie" as your search term in the Rare Disease Database.)
Multiple sulfatase deficiency is an extremely rare hereditary metabolic disorder in which all of the known sulfatase enzymes (thought to be seven in number) are deficient or inoperative. Major symptoms include mildly coarsened facial features, deafness, and an enlarged liver and spleen (hepatosplenomegaly). Abnormalities of the skeleton may occur, such as curvature of the spine (lumbar kyphosis) and the breast bone. The skin is usually dry and scaly (ichthyosis). Before symptoms are noticeable, children with this disorder usually develop more slowly than normal. They may not learn to walk or speak at the same time of other children. The specific symptoms and severity of this disorder can vary greatly from one person to another. Multiple sulfatase deficiency is inherited in an autosomal recessive manner. (For more information on this disorder, choose "multiple sulfatase deficiency" as your search term in the Rare Disease Database.)
Lysosomal storage diseases are inherited metabolic diseases that are characterized by an abnormal build-up of various toxic materials in the body's cells as a result of enzyme deficiencies. There are nearly 50 of these disorders altogether, and they may affect different parts of the body, including the skeleton, brain, skin, heart, and central nervous system. New lysosomal storage disorders continue to be identified. While clinical trials are in progress on possible treatments for some of these diseases, there is currently no approved treatment for many lysosomal storage diseases. (For more information on this disorder, choose "lysosomal storage diseases" as your search term in the Rare Disease Database.)
Standard Therapies
A diagnosis of Maroteaux-Lamy syndrome is based upon identification of characteristic symptoms, a detailed patient and family history, a thorough clinical evaluation and a variety of specialized tests.
Clinical Testing and Workup
In individuals suspected of Maroteaux-Lamy syndrome the urine will be examined to assess the levels of the mucopolysaccharides. Elevated levels of dermatan sulfate are indicative of Maroteaux-Lamy syndrome. In addition, a blood sample may be taken to measure the enzyme activity of arylsulfatase B because deficient or absent activity of this enzyme is also indicative of the disorder. Certain types of skin cells (skin fibroblasts) can also be examined to determine arylsulfatase B enzyme activity.
Molecular genetic testing can confirm a diagnosis of Maroteaux-Lamy syndrome. Molecular genetic testing can detect mutations in the gene ARSB, but is available only at specialized laboratories.
The treatment of Maroteaux-Lamy syndrome is directed toward the specific symptoms that are apparent in each individual. Treatment may require the coordinated efforts of a team of specialists. Pediatricians, surgeons, orthopedists, cardiologists, dental specialists, ear-nose-throat specialists (otorhinolaryngologists), specialists who deal with diseases of the lungs and respiratory tract (pulmonologists), specialists who asses and treat hearing problems (audiologists), specialists who asses and treat vision problems (ophthalmologists), and other healthcare professionals may need to systematically and comprehensively plan the treatment. Genetic counseling may be of benefit for affected individuals and their families. Psychosocial support for the entire family is essential as well.
In 2005, the U.S. Food and Drug Administration (FDA) approved the orphan drug Naglazyme® (galsulfase) for the treatment of individuals with Maroteaux-Lamy syndrome. Naglazyme is an enzyme replacement therapy (ERT), a therapy in which the missing or inactive enzyme is replaced with a genetically engineered (recombinant) version. For more information, contact:
BioMarin Pharmaceutical, Inc.
105 Digital Drive
Novato, CA 94949
Telephone: (415) 506-6700
Fax: (415) 382-7889
Patient & Physician Support; (866) 906-6100
Additional treatment is symptomatic and supportive. For example, surgery may be necessary to treat various abnormalities associated with Maroteaux-Lamy syndrome including carpal tunnel syndrome, skeletal malformations, spinal cord compression, degeneration of the hip, and hernias. Heart valve replacement may be necessary in some cases. Surgical removal of the tonsils and/or adenoids may be recommended. Tracheomalacia is usually treated by noninvasive measures, but in rare cases can require surgical intervention.
Hydrocephalus may be treated by the insertion of a tube (shunt) to drain excess of cerebrospinal fluid (CSF) away from the brain and into another part of the body where the CSF can be absorbed. A corneal transplantation can be performed for individuals with severe corneal clouding. Individuals with conductive hearing loss may experience the accumulation of a sticky fluid within the middle ear (glue ear). This is treated with a procedure called a myringotomy, in which a thin incision is made in the eardrum to release the fluid. There is no specific treatment for sensorineural hearing loss. Hearing aids may help to maximize remaining hearing.
Certain medications can be used to treat heart abnormalities, asthma-like episodes, and chronic infections. Anti-inflammatory medications may be of benefit. Respiratory insufficiency may require treatment with supplemental oxygen. Aggressive management of airway secretions is necessary as well.
Some affected individuals may undergo a sleep study, in which people are evaluated on how well they sleep and how well their body responds to sleep problems. Sleep apnea may be treated with continuous positive airway pressure (CPAP), which involves the use of a mask or similar device to deliver mild air pressure to keep airways open. In some cases, a similar treatment method known as bilevel positive airway pressure (BPAP) may be used. BPAP devices provide more pressure when you breathe in and less pressure when you breathe out.
Physical therapy and exercise may improve joint stiffness. Speech therapy may help children with hearing loss communicate effectively. Nutritional counseling and occupational therapy may also beneficial.
Investigational Therapies
Hematopoietic stem cell transplantation (HSCT) as a way to replace the defective enzymes has been studied as a treatment for individuals with mucopolysaccharidoses. Hematopoietic stem cells are specialized cells found in the bone marrow (the soft spongy material found in the long bones). These blood stem cells grow and eventually develop into one of the three main types of blood cells -- red cells, white cells, or platelets. A transplant is done to replace the bone marrow (and consequently the whole blood system) of an affected individuals with marrow from a person who does not have a particular disorder. The healthy cells produced by the new marrow contain sufficient levels of the lysosomal enzyme arylsulfatase B. The effectiveness of HSCT has varied greatly. Physical characteristics may improve, such as cloudy corneas may become clear, the size of an enlarged liver or spleen may be reduced, and mucopolysaccharides levels may drop. Other symptoms are unaffected. The effect on neurological symptoms varies considerably. HSCT in Maroteaux-Lamy syndrome has only been tried in a handful of cases. Because HSCT is a procedure that carries significant risks, it should only be considered in selected cases. More research is necessary to determine the long-term safety and effectiveness of HSCT for individuals with Maroteaux-Lamy syndrome.
Gene therapy is also being studied as another approach to therapy for individuals with mucopolysaccharidoses such as Maroteaux-Lamy syndrome. In gene therapy, the defective gene present in a patient is replaced with a normal gene to enable the production of the active enzyme and prevent the development and progression of the disease. Given the permanent transfer of the normal gene, which is able to produce active enzyme at all sites of disease, this form of therapy is theoretically most likely to lead to a 'cure'. However, at this time, there remain some technical difficulties to resolve before gene therapy can be advocated as a viable alternative approach.
Information on current clinical trials is posted on the Internet at www.clinicaltrials.gov. All studies receiving U.S. government funding, and some supported by private industry, are posted on this government web site.
For information about clinical trials being conducted at the NIH Clinical Center in Bethesda, MD, contact the NIH Patient Recruitment Office:
Toll-free: (800) 411-1222
Email: email@example.com
For information about clinical trials sponsored by private sources, in the main, contact:
For more information about clinical trials conducted in Europe, contact: https://www.clinicaltrialsregister.eu/
Maroteaux Lamy Syndrome Resources
NORD Member Organizations:
(To become a member of NORD, an organization must meet established criteria and be approved by the NORD Board of Directors. If you're interested in becoming a member, please contact Susan Olivo, Membership Manager, at email@example.com.)
Other Organizations:
Clarke JTR. Mucopolysaccharide Storage (MPS) Diseases. In: NORD Guide to Rare Disorders. Lippincott Williams & Wilkins. Philadelphia, PA. 2003:474-476.
Gorlin RJ, Cohen MMJr, Hennekam RCM. Eds. Syndromes of the Head and Neck. 4th ed. Oxford University Press, New York, NY; 2001:135-137.
Jester S, Larsson J, Eklund EA, et al. Haploidentifical stem cell transplantation in two children with mucopolysaccharidosis VI: clinical and biochemical outcome. Orphanet J Rare Dis. 2013;8:34. http://www.ncbi.nlm.nih.gov/pubmed/24107440
Brands MM, Oussoren E, Ruijter GJ. Up to five years experience with 11 mucopolysaccharidosis type VI patients. Mol Genet Metab. 2013;109:70-76. http://www.ncbi.nlm.nih.gov/pubmed/23523338
Brands MM, Hoogeveen-Westerveld M, Kroos MA, et al. Mucopolysaccharidosis type VI phenotypes-genotypes and antibody response to galsulfase. Orphanet J Rare Dis. 2013;8:51. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3637222/
Braulin E, Rosenfeld H, Kampmann C, et al. Enzyme replacement therapy for mucopolysaccharidosis VI: long-term cardiac effects of galsulfase (Naglazyme®) therapy. J Inherit Metab Dis. 2013;36:385-394. http://www.ncbi.nlm.nih.gov/pubmed/22669363
Jurecka A, Golda A, Opoka-Winiarska V, et al. Mucopolysaccharidosis type VI (Maroteaux-Lamy syndrome) with a predominantly cardiac phenotype. Mol Genet Metab. 2011;104:695-699. http://www.ncbi.nlm.nih.gov/pubmed/21917494
Valayannopoulos V, Nicely H, Harmatz P, Tuberville S. Orphanet J Rare Dis. 2010;5:5. http://www.ojrd.com/content/5/1/5
Decker C, Yu ZJ, Giugliani R, et al. Enzyme replacement therapy for mucopolysaccharidosis VI: growth and pubertal development in patients treated with recombinant human N-acetylgalactosamine 4-sulfatase. J Pediatr Rehabil Med. 2010;3:89-100. http://www.ncbi.nlm.nih.gov/pubmed/20634905
Giugliani R, Federhen A, Rojas MV, et al. Mucopolysaccharidosis I, II, and VI: brief review and guidelines for treatment. Genet Mol Biol. 2010;33:589-604. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036139/
Giugliani R, Harmatz P, Wraith JE. Management guidelines for mucopolysaccharidosis VI. Pediatrics. 2007;120:405-418. http://www.ncbi.nlm.nih.gov/pubmed/17671068
Karageorgos L, Brooks DA, Pollard A, et al. Mutational analysis of 105 mucopolysaccharidosis type VI patients. Hum Mutat. 2007;28:897-903. http://www.ncbi.nlm.nih.gov/pubmed/17458871
Muenzer J. The mucopolysaccharidoses: a heterogeneous group of disorders with variable pediatric presentations. J Pediatr. 2004;144:S27-S34. http://www.ncbi.nlm.nih.gov/pubmed/15126981
Harmatz P, Nicely H, Tuberville S, Valayannopoulos V. Mucopolysaccharidosis type 6. Orphanet Encyclopedia, April 2010. Available at: http://www.orpha.net Accessed December 15, 2013.
McKusick VA., ed. Online Mendelian Inheritance in Man (OMIM). Baltimore. MD: The Johns Hopkins University; Entry No:253200; Last Update:10/04/2012. Available at: http://omim.org/entry/253200 Accessed December 15, 2013.
The information in NORD's Rare Disease Database is for educational purposes only. It should never be used for diagnostic or treatment purposes. If you have questions regarding a medical condition, always seek the advice of your physician or other qualified health professional. NORD's reports provide a brief overview of rare diseases. For more specific information, we encourage you to contact your personal physician or the agencies listed as "Resources" on this report.
The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD's copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.
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Report last updated: 2014/03/05 00:00:00 GMT+0
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29 February 2012 -
Read my lips: Barack Obama versus Mitt Romney
07 September 2012
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» Freezer fine, fridge warm, coil not frozen, evaporator fan? |
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Freezer fine, fridge warm, coil not frozen, evaporator fan?
Model Number: 795.77243601 Brand: Kenmore Age: 1 - 5 years
Kenmore Elite Refrigerator with bottom freezer and double top doors, Model 795.77243601, 4 years old (about). Yesterday I noticed the milk was warm, fridge setting on LED display is 37 but temp in fridge is 46, temp in freezer is zero. Tried unplugging it for 5 minutes, then left it over night, no change. Put an AC thermometer into the duct at the top back of the fridge, zero degrees but no air flow out (no fan blowing.) Removed the shelves and rear duct, no ice anywhere. Looking down into the hole at the back of the fridge where the air comes out of the freezer, I can see the fan, but it isn't blowing. Past the fan blades I can see the coil and there is no evidence of ice anywhere. Online opinions I have read state either a damper/damper solenoid problem, blower problem, or coil iced up. I can see the coil so I don't think that is it. Could be the damper but since I can see the fan not working that would seem to be the place to start. Am I on the right track? If so, it would seem to indicate testing the fan or whatever controls the fan. Suggestions on how to go about that? Where are the components I need to test? Thanks Related Models |
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Makes 2 servings
Total time: 1 hour
Is cauliflower the new kale? It seems to be popping up everywhere lately. I've seen it roasted alongside farro, mashed up like potatoes, tempura battered and fried and ground up and used in pizza crusts. Since I haven't ever really prepared cauliflower before, I decided to do a simple slice and roast in a cast iron pan with some toasted sesame oil. The taste and texture here was delicious: it was perfectly crispy and caramelized around the edges and soft yet toothsome towards the center. I decided to top it off here with some sriracha-Vegenaise dressing, but it can also be served plain with the toasted sesame oil it's been roasted in.
2 large pieces of 1-inch thick cauliflower slices
2 tsp toasted sesame oil
salt and pepper
2-3 TB Vegenaise
2-3 TB sriracha, to taste
Preheat your oven to 400 degrees.
Make your cauliflower slices by removing the green leaves and most of the stem from the base. Leave some of the stem intact so the cauliflower doesn't fall apart. Then, place the cauliflower, stem side down, and slice into the center with a large knife. Slice again on either side to create two flat pieces. Rinse and pat to dry. Reserve the small and broken florets for using later.
Place 1 tsp of sesame oil into the bottom of a cast iron pan. Place the cauliflower pieces into the pan, then drizzle the remaining 1 tsp of sesame oil over the cauliflower. Sprinkle with the salt and pepper. Place into the oven to roast for 20-25 minutes, checking after 20 minutes. Once it is nicely browned around the edges, carefully flip the pieces over and roast for 20 to 25 minutes more. It's done when the edges are all perfectly crisp.
Whisk the Vegenaise and sriracha together, adjusting the heat level to your taste. Drizzle over the cauliflower and serve immediately.


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Fanwood Environmental Commission seeks volunteers to remove non-native invasive plants at the Fanwood Nature Center.
The Fanwood Environmental Commission is a statutory board of eight regular members and two alternates. The regular members include Liaison (Planning Board) & Liaison (Town Council).
Our charge includes studying and making recommendations concerning open space preservation, water resource management, air pollution control, solid waste management, noise control, soil and landscape protection, environmental appearance, and protection of flora and fauna.
We promote the conservation, protection, development, or use of all Fanwood's natural and water resources by:
Chairperson: Gary Szelc
Members: Sandra Redder, Kalpana Krishna Kumar, Margaret Chowdhury, April Lee, Erin Sanders, Daniel Zucker (Liaison -Planning Board)
Secretary: Moenika Chowdhury
Alternate: Dave Schwartzberg
Liaisons: Kathy Mitchell (Council)
Caretaker—Fanwood Nature Center: Dean Talcott
Associate Member: Nikolai Chowdhury
Fanwood Community House ("The Old Train Station")
Second Floor
230 North Avenue, Fanwood, New Jersey 07023


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hand held radio for man overboard
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Re: hand held radio for man overboard
Originally Posted by
If you're more than 3 miles offshore, the cell phone (no matter how rugged) is useless. My vote would be to have a PLB (with GPS capability) + AIS MOB beacon attached to my personage at all times. The bigger thing would be to also have a pfd with crotch straps so that if you overboard, the pfd stays on you.
The PLB will alert SAR teams like USCG. The AIS beacon will alert boats in the vicinity. The two together will help you if you're in warm water. If you go MOB in cold water...well, with those two gizmos + a good pfd, at least they'll recover your body for the funeral.
So we're talking about $350 for a PLB w/GPS capability
$300 for an AIS MOB
$140 for a self inflating, hydrostatic activated pfd
$30 for retrofitting crotch straps.
In my opinion, worth *EVERY* penny if you do a lot of singlehanding or overnight watches...
Would not you want a cheap (available for under $100) hand held vhf so you could communicate with rescuers? Many times a rescue is delayed while the responders verify it is not a false alarm. If you could communicate you would be golden.
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Hamburg, New York Trench Collapse Challenges Firefighters
Hamburg, NY- On Tuesday, March 22, 2005 firefighters from Big Tree, Newton Abbott and the City of Buffalo performed a challenging technical rescue. At 14:44 hours Big Tree firefighters were dispatched for a man trapped in trench collapse. First responding units were notified that the man was apparently was unresponsive.
First Assistant Big Tree Chief Chris Zak was first on location confirming a trench collapse with unstable ground surrounding the area and two workers in the trench trying to dig out the male. Assistant Chief Zak advised to the workers to vacate the trench because of the unstable soil.
A male worker was seen buried up to his shoulders about 10 feet down. The collapse had come from behind him pinning him against the opposite wall.
Assistant Chief Zak immediately requested Big Tree Rescue 7 and Newton Abbot Rescue 3 for stabilization struts and cribbing. Also, the City of Buffalo Fire Department


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article: ""
NVIDIA has just announced an insane new GPU. Designed for (wealthy) graphic professionals, the Kepler-based Quadro K6000 is, apparently, "the fastest and most capable GPU ever built".
With twice the capacity of the Quadro 6000 that it replaces, the specs on this thing are just crazy: it has 12GB of super-fast DDR5 graphics memory, 2,880 streaming multiprocessor cores, ultra-low latency video I/O, and the ability to drive four simultaneous displays at up to 4K resolution. So, you probably need this on your home PC, right?
Just as an example of the power of this thing, Nissan can apparently load almost-complete vehicle models using it. And that's incredibly impressive. But impressive will come at a cost. While there are no firm pricing details available at present, the K5000 costs $2,250— so brace yourself. It'll be available in the fall. [NVIDIA] ""
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Posted on February 2, 2011
Cal U's latest TV spot, a
30-second advertisement called "Built," showcases our campus and the
University's mission. The animated ad made its debut
Jan. 23, airing just before the AFC Championship football game. On Sunday, Cal U students,
alumni and University watched the spot during the first half of the Super
Bowl. TV advertising raises awareness
of California University, highlighting its mission of building character and
careers. It's an important tool for
recruiting new students — and careful shopping in the local media market makes
it both effective and affordable, said Craig Butzine, vice president of
Marketing and University Relations.
"If we can show our ad when a
big game is being televised, we know the message will reach a broad audience of
prospective students and their parents, as well as current students and
alumni," he said. "So we watch for opportunities
to buy local air time at a discounted rate. We hunt for bargains. And by making
strategic decisions, we get good value for our marketing dollars." "Built" is the second
advertising spot created for the University by Little Fluffy Clouds, an
award-winning animation studio in San Francisco. Husband-and-wife team Jan van
de Beek and Betsy DeFries spent several days at Cal U so they could accurately
render the campus on film. Like "Journey," the first ad in
the series, the new ad resembles a watercolor painting. "Built" shows an
architectural drawing coming to life as a student bicycles across the campus to the new Convocation Center. "It gives viewers a look at our
beautiful campus," Butzine said. "And like our previous ads, it reinforces the
message that Cal U students not only prepare for careers, but earn 'a degree of
character,' too."


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Thread: LAFD Backround etc
- Join Date
- Nov 2008
- Posts
- 11
LAFD Backround etc
i am going through LA City's hiring process, though it seems like almost everyone is at some stage in LA city's process! i got through written/interview/background interview with no real problem. my background interview was on the 18th of September. i'm just wondering how long it's going to be until i get a letter giving me an answer one way or another, about whether or not i will be moving on to the actual background? i wouldn't say i'm anxious, but i do lose a little hope every day i check the mail and nothing is there. what is a normal wait time in your guys' experience?
- Join Date
- Nov 2008
- Posts
- 45
I am also in the September 18th group. Everyone that is receiving the results seem to be in groups earlier than ours. I have spoken to a few candidates and friends that received their results and they were all in the Sep 4th class. I called personnel today and they said they have not reviewed my packet which leads me to believe they have not gotten to our group yet.
Also keep in mind that it is a LONG process with LAFD. Even though some candidates have been notified doesn't mean that we wont get notified later down the road. I have talked to candidates that have gotten their BI as soon as 2 months after their initial panel review to as far as 11 months after the first review.
Just hang tight, Im sure we will hear something soon. Remember that "no news is good news".
anywhere between 2-4 mos
thats what i keep hearing from personnel. they say they are backlogged due to having so many applicants. personally the overload of ppl is making it very exhausting to get in with a dept like La City. it seems now that the background investigators are only looking to keep the guys with the easiest backgrounds moving along (i.e. not many jobs and squeeky clean records) as opposed to those with more jobs and hiccups here n there but a lot of experience. dont know if u hav heard but check this site out and hear some of the testimonys.....http://www.lafdnonselected.com
all i can say is keep pluggin away...
- Join Date
- Jul 2008
- Posts
- 138
What a dumb website. All people do in this country is complain.
Hello Captain Kearns and fellow not selected candidates. I tested with LaCity back in November of 2007. After passing the test and getting a 100 percent on my interview I felt confident being 21 years old, a Paramedic before the age of 20 and being in the medical field since I was 18 years old running 9-1-1 calls with Los Angeles County Fire Dept as an EMT. Ever since I was five years old I wanted to become a firefighter. During high school I worked hard and got good grades ( 3.4 gpa and above). I took Fire Technology classes in college at the same time I was in high school along with getting my EMT certificate. I had to wait to get my EMT license because I was under the age of 18. I was also an LacoFD explorer and went to the fire acadamy and became a certified explorer. After about a year as an explorer I became one of our lead explorers. After high school I continued to take fire science classes, building construction, and I completed a basic wildland fire acadamy. So after I moved through the selection process with lafd relatively fast, I received that letter saying that I was not mature enough and my decision making and judgement got me disqualified or not selected, I along with family, friends and Co workers in the medical field were stunned as were many firefighters already hired by LA City or LA County. I became a paramedic because I love this field and I wanted to do everything in my power to try to get myself into the fire department. After spending over ten thousand dollars for paramedic school and investing all my time, hard work and patience, I feel that my application was not taken seriously. I have worked too hard and have gone too far to allow someone who has not seen me work in the field tell me that I am not mature enough or that I have no experience.
- Join Date
- Nov 2008
- Posts
- 2
so lafd personnel are more than happy to share about the hiring process if we ask?
not true
Intheprocess.....your statement about B.I.'s taking the easy way out is false . They do a complete investigation and it's up to the hiring authority as to who they pick and do not pick. The problem is that many candidates are impatient and start with the rumors. Just relax and good things happen to those who are patient.
Jay Dudley
Retired Fire
Background Investigator
Lifetime Member CSFA
IAFF Alumni Member
- Join Date
- Nov 2008
- Posts
- 45
I could not agree anymore with Jay Dudley.
Intheprocess, what you have heard or what you think is completely false about the background process. I have known people that have gotten hired within 5 months, to those that it has taken up to two years. Its how the panel review places you.
lt9ers, I am talking about the personnel safety dept. You will get the number when you go into backgrounds. You can ask them what your status is. I don't recommended calling unless it has been a few months past your projected date to receive information back about your backgrounds.
Also, about the nonselected website. I wouldn't pay any attention to that. It will only add to your nerves if you are waiting to hear back. If you weren't chosen by this department move on. There are plenty of other departments out there. LAFD is a different department and has quite different hiring standards than other departments.
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Wow, I think Kim & Sherri are two of the hottest coaches in the country ! By the way, what did everybody think of Bill's comments after they beat Nebraska, he stated " that he did not know if it could get any better then this , first they beat Nebraska in overtime, then he got a kiss from his wife, and a hug from Sheri Coale ". Great to see that coach is human . lol ! CyFreddy
Sherri....not even close. She has a subdued sexiness about her. She's not model material at all, but something about her screams I'm a little bit naughty. I think most men pick up on that...
Better yet....one of Baylor's assistants!! http://baylorbears.cstv.com/sports/w...ennifer00.html
Originally Posted by psycln11 Better yet....one of Baylor's assistants!! http://baylorbears.cstv.com/sports/w...ennifer00.html Yeah the assistant gets my vote.
Originally Posted by kuney1 Yeah the assistant gets my vote. Too much makeup an a little bit of a "bug eye" thing going on with her IMO. I'm sticking with Sherri.
Remember how just a couple months ago how Bill seemed down and wondered if it was time that there was a change of coaches himself? Now look at where they ladies are. Looking at probably a #5 or 6 seed in the NCAA tourney and Bill looks re-energized. If anything I want to give this guy a lifetime contract at ISU. He deserves it and is the face of ISU women's basketball just like coach K is the face of Duke basketball.
pic of kim?
"I believe the state color for Alabama should be primer," Larry the Cable Guy.
Originally Posted by kgreeny pic of kim?
if that is a picture of one of the hottest coaches in the country then that has to say something about how good coaches look.....
Definitely SHerri.
Exaggeration is a BILLION times worse than understating.
who's the blond on espn. she's hot
Barry Melrose
Originally Posted by psycln11 Is that the kid from "Mask?"
Last edited by SuperCy; 03-09-2007 at 01:37 PM.
What ever happened to truth, justice and the American Way?
this thread is useless without pics of both
Originally Posted by kgreeny who's the blond on espn. she's hot Erin Andrews is the sideline reporter who is so hot, and Stacy Dales is the studio reporter who is pretty...she's an OU alum, all american, and divorcee in case you really wanted to know. ;)
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Vidler's 5
Website URLEast Aurora, NY
An 83 year old family business that still sells balsa-wood gliders, hair-nets, oil cloth and coon-skin caps among 74,996 other items; "innovation" doesn't spring to mind when somebody mentions Vidler's 5 & 10. But we've embraced social media - facebook, YouTube and Twitter - attracting a new audience that is delighted by our nostalgic, fun and entertaining shopping experience. We pride ourselves on being an original five and dime variety store, and we're slowing stepping into the 21st century. But 'live chat' to us means that if you call the store, a real, live person will still talk with you!


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Advertisement -- Learn more about ads on this site.
Secrets of Success< Secrets of Success Main PagePlease note these are member-submitted secrets and are not reviewed by SparkPeople's health experts for accuracy. If you feel a secret is inappropriate, please click the "Report Inappropriate Secret" on the secret's page and our staff will review it.
I got kind of lost in all of the information out there about losing weight so I made a calendar on my phone that alerts me when it's time to eat, cook, workout etc. These times corrospond with appointments and my work schedule so I'm able to "make an appointment" to work out and only eat when my calendar tells me it's time to!
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Price: $14.99
Personalize ItemYou don't have eight arms, but Flex Octopus has more than enough to lend a hand! This adorable tote can carry your gear to the beach, the playground or a friend's house. Generously sized blue tote has exterior pockets and mesh panels on the bottom to let sand sift out.
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WATCH: Jay Rayner Learns PSY's Famous Gangnam Style Dance For Journalism
Sometimes, when Jay Rayner isn't busy eating and reviewing food, he's off doing other types of journalism. On this specific occasion, he was sent by his editor to learn how to do the dance of the year with Korean rapper PSY.
Though Rayner finds Psy endlessly fascinating as the subject matter of the profile (which ran in Sunday's Guardian in the UK), at some point he (like Britney Spears and United Nations Secretary-General Ban Ki-Moon before him) must learn how to Gangnam Style.
The good thing about Gangnam Style, PSY points out, is that it's alright to look goofy while dancing it — in fact, it enhances the visual appeal of the dance.
Rayner's verdict: "I hate my editor."
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Systemwide Events Calendar
Arts Exhibition: Ainu Treasures: A Living Tradition in Northern Japan
January 20, 2013 - May 5, 2013Manoa Campus, East-West Center Gallery, John A. Burns Hall
The Ainu are an indigenous people of Japan. "Ainu" means "human" in the Ainu language. They once inhabited northern Honshu (Japan's largest island), Hokkaido, southern Sakhalin, and the Kurile Islands. Most Ainu now live in Hokkaido, with a limited number in Tokyo, in other parts of Japan, and abroad.
In recent decades, indigenous people throughout the world have taken the initiative to revive their traditional cultures and the Ainu are no exception. One of the examples of such an attempt is a project for Ainu artists to make replicas of Ainu artifacts owned by various museums. This activity is helpful for the Ainu people to regain what has been lost and integrate the traditional skills of ancestors into contemporary works. Moreover, these new cultural resources inspire both innovation and creativity among Ainu artists.
This exhibition features modern Ainu masterpieces and reproductions of Ainu artifacts held by Hokkaido University's Botanic Garden Museum; early 20th century Ainu handicrafts from the Bishop Museum in Honolulu; historic and contemporary photographs of Ainu craftsmen; and video clips showing historical and social context.
Curator: Michael Schuster
Guest Curator, Photographer: Koji Yamasaki
Additional research: Masaru Kato, Nanako Iwasa, Vincent Mitsuharu Okada
Exhibit design: Lynne Najita,Michael Schuster
Guest visual artists and lecturers: Toru Kaizawa, Jirota Kitahara
Guest performers: Oki, Marewrew, Shusei Toko, Ikuo Yamamaru
The Ainu Treasures project was made possible by generous support from The Japan Foundation and Hawaiian Airlines.
Additional support provided by the Hawaii Pacific Rim Society, Friends of Hawaii Charities, Honolulu Festival, The Foundation for Research and Promotion of Ainu Culture, The Ainu Association of Hokkaido, and contributors to the EWC Foundation, including members of the EWC Arts 'Ohana.
Event Sponsor
Arts Program, East-West Center, Manoa Campus
More Information
Saturday, February 9 | |
7:00am | The Wellness Center - Fitness Class Schedule Maui Campus, Pilina Bldg., Wellness Center |
8:00am | University of Hawaii Cancer Center presents XCEL Race Against Skin Cancer Manoa Campus, 701 Ilalo Street, Honolulu, Hawaii 96813 |
8:30am | Recreational Thrill Craft Operators Safety Educational Course - Oahu Windward Campus, Hale Alaka'i 101 |
8:30am | Ocean Safety Educational Course - Oahu Windward Campus, Hale Alaka'i 101 |
9:00am | Words in the World: Literatures, Oratures, and New Meeting Grounds Manoa Campus, Art Auditorium and the Kamakakūokalani Center for Hawaiian Studies |
10:00am | Wow! That's Engineering! Waipahu High School Cafeteria, 94-1211 Farrington Highway, Waipahu, HI 96797 |
1:00pm | Free Commuter Cycling 101 Workshop Manoa Campus, Moore 112 |
4:45pm | Chess Exhibition with WGM Jana Krivec Honolulu Campus, Washington Middle School, 1633 S King St. |
8:00pm | Taiko Drum and Dance Manoa Campus, Kennedy Theatre on the Mainstage |
11:00pm | Danny and the Deep Blue Sea Manoa Campus, Late Night at the Earle Ernst Lab Theatre |
- Highlighted dates have scheduled events.
- Select the date to view all events for that day.
Ongoing Events
- Scholarships Available!
- Lineage : A Family Tree of Printmakers
- The White Rose : nonviolent resistance against the Nazi regime
- Arts Exhibition: Ainu Treasures: A Living Tradition in Northern Japan
- Biggest Loser Challenge
- SAPFB Fall 2013 Funding Applications Available
- Picturing the Ryukyus: Images of Okinawa in Japanese Artworks from the UH Sakama
- 3rd Cross-Cultural Health Care Conference


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Pro Staff in Chanhassen is hosting a Customer Service focused Open House tomorrow February 28th from 9 AM to 3 PM for multiple Customer Service/Call Center positions available in the Downtown, Minneapolis and SW Metro area. If you have experience in Call Center or Customer Service fields, stop by our office with a copy of your resume to speak to a Recruiter to find out more!
*Solid work history
*Ability to successfully pass a background and drug test (credit check will also be needed depending on the position)
*Excellent Customer Service and Data Entry skills
*FT and PT positions available, including weekends
Pay varies by position, starting at $10.50-13.00 DOE
Stop by the Chanhassen Pro Staff office with a copy of your resume between 9 AM and 3 PM to find out more!
Chanhassen Pro Staff
18922 Lake Drive East
Chanhassen, MN 55317
Division: Pro Staff
Job ID: GEN7387
This job is no longer available
Pro Staff
Thursday, February 28, 2013
Thursday, March 28, 2013
Chanhassen, MN
Job Type
Employment Status


text:
Three Missourian reporters and two information graphic artists analyzed pages of data to put together a portrait of who we are as Columbians.
They looked at reports from the U.S. Census Bureau; U.S. Department of Agriculture; Bureau of Labor Statistics; state departments that monitor health and education; and other sources to describe the average city resident.
This section is a compilation of their research and details where we live and work; how we spend our food budget; where we play; and how we vote; what we drive; and our primary causes of death. The reporters also talked to more than a dozen Columbians to illustrate the data.


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Ralph W. Moss is right to highlight the overeagerness among doctors and insufficient questioning by journalists that have resulted in the spread of incomplete information about Herceptin and its risks (4 March, p 22). The potential for harm to desperate patients, and the relationship between scientific consultants and the drugs about which they make positive statements, pose ethical problems that need to be resolved.
The hype about Herceptin should serve as a reminder to patients everywhere of the need to question doctors thoroughly about risks or side effects before accepting a new drug or device. Disseminating medical information brings with it a substantial responsibility. Moss's article vindicates those physicians and patients who exercise a healthy dose of scepticism. He deserves to be applauded for confronting the lax status quo.
To continue reading this article, subscribe to receive access to all of newscientist.com, including 20 years of archive content.


text:
Rick Smith looks smarter every day
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Re: Rick Smith looks smarter every day
Originally Posted by
Not getting into the cat fight,
But I do believe Alex Gibbs was brought in to fix the OL and he was promised the 1st rd pick that yr. Just like with Wade and the defense. I've got no proof of that. Just call this an educated guess.
Rick was smart enough to listen to a HOF OL coach and pick D.Brown.
I don't think Rick doesn't listen to the coaches but I don't think anyone is given Carte Blanche to pick who they want.
Rick gives his list of guys to the coaches and the coaches take a look at guys he's identified and then based on that list, they work out who's going to be drafted.
Alex Gibbs was given a list of guys and told, "Tell me who you want. Tell me which guys fit into your system. We're going to make fixing the line a priority so which guys will do that." Don't forget, Rick traded back and still got his guy. So there was every chance he would have missed on him but he didn't.
Same with Wade and the same with Frank Bush and Richard Smith before him.
But if there hadn't been anyone at that pick worthy of it, the pick would have gone another way.
Heck, if Ted Ginn, Jr. had been available, we would have had him instead of Amobi Okoye.
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text:
An e-mail rant about god
Dear friend,
Apologies, feel free to not read this. I am mostly ranting because I spent a couple of hours (weeks, actually, if you count all that election crap) watching Americans debate religion. Love and miss xox
ps: How are your lives? The sun set at 3 today. It was traumatic and made my tummy-clock go haywire. I ate dinner three hours early.
A rant about evolution vs. creationism
I spent a while watching vids/reading about the evolution vs creationism debate. The problem is, they only pit extremists against each other instead of moderates who are able to compromise their views and come to some sort of agreement - if only the agreement to disagree. Though I suppose that doesn't make very entertaining television. Most of the creationists' arguments were bullshit - I'm not even going to bother questioning the authenticity of the bible, or the existence of Jesus as the Messiah, or the fact that any kind of extremist is a lunatic (because they indisputably are) - however I have one question:
Even science believes in certain laws that govern physics, and certain trends in the biological design of organisms - the simplest example being that all material occurs/is formed in layers, from skin structure to rocks to planetary crusts - THEREFORE is this repetitive design/laws of movement not evidence that there is something larger out there influencing the formation of life and the universe?
But, as many have pointed out, CORRELATION DOES NOT EQUAL CAUSATION. Therefore just because it LOOKS like someone's painstakingly constructing the universe one block at a time DOES NOT MEAN that it is definitive proof of intelligent design.
The fact of the matter is that 'God' seems to be a convenient construct that seeks to fill the gaps in our understanding of the universe - an unromantic, anti-climatic finish to a heated debate. And while I hate the idea of life simply existing for the sake of existing (because it takes the 'meaning' out of living, in some ways - like you're nothing special, only an irrelevant drop in the cosmic ocean) you have to agree that objectively, it makes sense.
Though I wonder about all those things I believe in that can't be objectively and quantitatively measured - things like believing in spirits and bad dju-dju; things like instinct (despite its biological basis, cannot be objectively and accurately measured); things like good and bad vibes - I intrinsicly and instinctively believe in these things; in the power of thought and emotions, both animal and human...so why not God? Truth: science can neither prove nor disprove the existence of God. At least not right now.
You already know that I personally believe in God - though I feel that my understanding of 'God' corrupts the canonical belief that he(?) is this merciful father-figure and we are his(?) favourite babies.
No, my understanding of God is this:
Every living thing - ie: every organic existence in the universe - is connected. Rocks and planets and stars and snails and humans are all linked together by repeating elements, chemicals and genetic makeup. This connection; this sense of unity between all things; this energy that is recycled and becomes us - this is what I call 'God'.
However, in light of my understanding, consider this dilemma: which came first, life, or God?
Most people will call me retarded and say that God (whatever that is) created all life. Even scientists who agree with my theory that God is essentially some form of energy (spiritual or otherwise) will say that the energy that exists in life needs to come from somewhere to begin with.
But by this logic, the argument becomes cyclical, chicken-or-the egg and Escheresque - where did 'God's' energy come from anyway?
The only way I can explain this to myself is thus :we exist; therefore God exists - and vice versa. Both life and God need each other to survive. Energy and information is transmitted back and forth in an endless loop. We are part of a massive self-sustaining system.
I am not trying to disprove the existence of 'God' - rather I am saying (and please lets not burn me at the stake) that we are a part of God because we are a part of the system; the endless loop of every organic thing existing together that as a whole make up the system known as 'God'.
To put it simply (as Douglas Adams suggests in 'The Hitchhikers Guide to the Galaxy'): We are all little parts of a massive multiverse-sized programme (or maybe even several of these programmes) collectively called 'God'. God's immediate purpose is to help maintain order within its system; in turn, we as blips in the programme exist to recycle the energy within it so that the entire programme can run at full capacity.
What is the end purpose of the programme itself? Why does "God" need to exist in the first place? No fucking clue. I haven't thought that far yet. Feel free to call me on my shit. I think I just contradicted myself. Oh well. THE JOYS OF SEMI-SCIENCE 3


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AMC'S Best Day Hikes in Vermont
Price: $18.95
Here is a four season guide to 60 of the best trails in the Green Mouintain State. An at-a-glance trip planner highlights the best trail options for kids, dogs, snowshoeing and cross-country skiing. Illustrated, index
258 pp. 2013 P $18.95


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May 31, 2012- race 8
Race Type:
Entries & Results
Pg# | Horse | Win | Place | Show |
5 | Stealcase | $3.20 | $2.40 | $2.20 |
4 | Morgan's Guerrilla | $2.80 | $2.60 | |
8 | Seven Lively Sins | $4.40 |
Also Ran:
- 2 - Agent Di Nozzo,
- 7 - Beer Garden
- 6 - Event Center
- 3 - Alexander Thegreat
- 1 - Sark
Wager Type | Winning Numbers | Paid |
Daily Double | 1-5 | $10.40 |
Exacta | 5-4 | $16.00 |
Superfecta | 5-4-8-2 | $176.60 |
Trifecta | 5-4-8 | $78.20 |
Pick 3 | 2-1-5 | $17.80 |
Churchill Downs Today Thu, May 31, 2012
Track | Wager | Amount |
Arlington | Jackpot High-5 | $8,187.00 |
Jill Byrne's Handicapping
Race 1
Alberta's Book (5) returned from a layoff against the boys last out and faded. She can improve off that and back with the girls today. Gabbie Gulch (3) is better than her last effort and fits with these. Checkitoff (2) has been running well against a similar group.
Race 2
Diamond d'Oro (6) drops in for a claiming price for the first tiume and has shown good speed versus better. Dancin' Lil (7) just missed at this level last out and figures to be sharp again today. Time Thief (2) raced well in her debut and looks to move forward off that.
Race 3
Tank's Letter (7) is consistent and goes for a new stable today at the level he is best at. Hammers Bullet (3) drops in class and has faced better company with success. Lumpy's Ace (4) has run two decent races back to back.
Race 4
Burban (3) returned from a layoff with a sharp effort and should handle the next step here. Young and Lovely (4) ran a good second to next out winner Ice Cream Silence and is the biggest threat to the top pick. Henny's Hurricane (5) has a good local record and gets a good pace setup.
Race 5
Scat Chief (5) is bred to improve on the turf and need only run to his last race to be a factor here. Wandering Kitten (1) is a debut runner with an excellent turf pedigree and solid morning works. Double Crossing (2) may improve with the drop into a claiming race today.
Race 6
Regal Nurse (2) looks well placed to make it ten wins in a row at short odds. Lady Durlyn (3) is better than her last race suggests and can rebound from that effort. Networking (4) goes for a new stable and has had success at this starter level before.
Race 7
Guys Reward (1) exits a strong stakes race and does his best running on the Matt Winn Turf Course. Strike Impact (5) narrowly missed last out and always runs well locally and may be the best of the pace today. Furthest Land (4) returns to the races off a 13 month break and is the class of this field if ready to go today.
Race 8
Agent Di Nozzo (2) exits a good effort in a strong race and has worked well since then. Morgan's Guerrilla (4) adds blinkers today and returns to the dirt surface which he prefers. Stealcase (5) ran a huge race in the Derby Trial (GIII) last out and seems to be improving.
Race 9
Wallofsound (9) debuts for a top juvenile barn with good workouts but will have to be sharp from the gate to avoid a wide trip. Blueeyesintherein (6) has a solid series of morning drills for a sharp stable. Shesakitty (4) has a win early pedigree and workouts to match. Bully Girl (2) and Dubai Blessing (3) are precocious looking debut runners.


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Follow @DaytimeRoyalty
Hello, soap fans -- and welcome to Daytime Royalty! For those unfamiliar, we are an uncensored community for fans and lovers of the daytime genre. We have a no-holds-barred atmosphere in regards to the shows, writers, actors etc. but we do not allow member bashing in any form. You're currently viewing our forum as a guest. This means you are limited to certain areas of the board and there are some features you can't use. If you join our community, you'll be able to access member-only sections, and use many member-only features such as customizing your profile, sending personal messages, and voting in polls. Registration is simple, fast, and completely free. Join our community! If you're already a member, please log in to your account to access all of our features. |
Jason47's Tribute: Goodbye, Lexie Carver...Farewell, Renee Jones; Videos, pictures, interviews & much more... | |
Tweet Topic Started: Jun 13 2012, 07:08 AM (2,152 Views) | |
Jason47 | Jun 13 2012, 07:08 AM Post #1 |
Jason47's Tribute: Goodbye, Lexie Carver...Farewell, Renee Jones After two decades of playing Lexie Carver on "Days of Our Lives", Renee Jones bows out gracefully next week when Lexie passes away in Abe's arms. As "Days" fans prepare to say goodbye to Lexie and farewell to Renee, please visit http://www.jason47.com for a very special tribute to the life of Lexie Carver and to Renee's many years on the show. From her early "Days" as Nikki Wade, Abe's secretary in 1982, to all of her years as Abe's wife & Theo's mother, take a look back at many Lexie scenes. Plus, reminisce with many of Renee's interviews through the years. And be sure to check out the special Jason47 tribute video to Lexie, featuring the debut scenes of all four actresses to play Lexie, followed by a moving goodbye in pictures. Make sure you have your tissues ready for the last 90 seconds of the video. All that and more at http://www.jason47.com/days/lexiecarver.html |
Sindacco | Jun 13 2012, 09:15 AM Post #2 |
This is great Jason! My favorite story with her was The Baby Switch. I'm gonna miss Renee. |
Virgo Twins | Jun 13 2012, 09:37 AM Post #3 |
Great Job Jason!!!!! Nice tribute to Renee(Lexie). |
Fafokahw | Jun 13 2012, 10:31 AM Post #4 |
Jason you did a fabulous job, this weekend I'll look at the wonderful clips you posted. Thanks for including my quote about Renee in the quotes section :)
Edited by Fafokahw, Jun 13 2012, 10:31 AM.
darraholic | Jun 13 2012, 01:12 PM Post #5 |
Great Job Jason! |
somersetfan | Jun 13 2012, 01:21 PM Post #6 |
Great job Jason! Gonna miss Renee/Lexie so much. |
Dorothy595 | Jun 13 2012, 03:37 PM Post #7 |
That was really something, Jason. You did yourself proud. I never knew they both were in Highway to Heaven and I watched that almost every week. |
Alin89 | Jun 13 2012, 04:54 PM Post #8 |
good job jason. |
restless daze | Jun 14 2012, 01:15 AM Post #9 |
Now don't come whoopin' my ass at the grocery store cause I picked on your fav on here!
Great job on the tribute Jason, well done! |
Mindy | Jun 14 2012, 11:22 PM Post #10 |
Amazing, Jason! What a wonderful tribute to the character and to Renee Jones. |
am103 | Jun 14 2012, 11:57 PM Post #11 |
This is remarkable! I loved the interviews especially; Renee seems like a genuinely great person. I wish her all the best! |
paigedown | Jun 16 2012, 10:49 PM Post #12 |
great job |
Liz<3Days | Jun 17 2012, 09:05 AM Post #13 |
Had the chance to watch and look at your tribute Jason and it was great (as always.) I loved the mention by JR @ DoD. |
dc cubs | Jun 17 2012, 10:12 AM Post #14 |
Jason, this is a wonderful job on the tribute. Thanks so much for putting this together. |
elci525 | Jun 17 2012, 10:35 AM Post #15 |
What a great tribute Jason...thank you!! I didn't know what a rich history Renee has had on Days! It makes her departure extra bittersweet for me. I am not sure if this is the right place to post about this, but it seems fitting as we are celebrating all things Renee Jones. Although it's not technically Days related, so I hope I am not breaking any laws here. =) I am a child of the 90s, and seeing as how my youthful 20s are slowly but surely coming to a close, I have been very, VERY nostalgic for all things 90s in recent months. Just today, I was remembering the Boyz II Men video for "On Bended Knee," and how it featured several actresses from the day I liked (including Lark Voorhies, whom I know played on Days, but whom I remember more fondly as Lisa Turtle from "Saved By the Bell"). Aaannnnyyyywaay, I have a point. I remembered there being one actress who seemed especially sexy, mainly b/c her vignette involved her posing for a nude portrait, and the boy II man she is paired with is especially foxy (or so I think). So this video arrives at this vignette, and wouldn't you know? That sexy vixen is Renee Jones!! At least, I am 99.9999% sure it is (there is always the chance I could be wrong). I was so surprised and happy about this discovery, that I felt the need to share it. I don't think I can link to non-Days-related You Tube vids. So if anyone wants to take a look, it's the video for "On Bended Knee" by Boyz II Men, and her part comes up around 3:10. It's pretty brief, so blink and you may just miss it. Didn't mean to derail this thread. Again, FABULOUS tribute Jason - thank you so much!!! Edited by elci525, Jun 17 2012, 10:39 AM.
DesignatedShelley | Jun 17 2012, 01:29 PM Post #16 |
Wonderful tribute, Jason, thanks for putting it together. Renee is such a talent. I hope she enjoys her retirement. |
Keith | Jun 17 2012, 02:26 PM Post #17 |
Ha! It is TOTALLY her! |
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Never training in your race shoes
If you've ever experimented with minimalist shoes, you know the toll they take on calf muscles. Even a short workout in a pair of Vibrams can thrash your legs. The biggest reason these shoes are so much harder on the calf muscles than typical trainers is the drop from the heel to the toe. Typical cushioned training shoes have a fairly substantial ramp that lets the forefoot sit lower than the heel, taking strain off the calf muscles and Achilles tendon. Minimalist shoes have a tiny (or zero) drop from the heel to the toe and leveling the shoe lifts your forefoot, putting tension back on the calf muscles.
Like minimalist shoes, many racing flats have a small drop from the heel to the toe. Robust cushioned trainers typically have an 8-12mm lift, and many racing flats have only 4mm of rise.
Just as it takes time to acclimate to minimalist shoes, acclimating to racing flats doesn't happen overnight. Wearing them just on race day will cause your lower legs to fatigue quickly. Instead of leaving your racing shoes in the closet until race day, slowly work them in to your weekly run training.
Because of their construction, racing shoes are typically best saved for days you run fast instead of slow recovery workouts. Start to acclimate to your racing shoes by swapping them in for your trainers during your weekly tempo or interval workout. As you get stronger, you can use them for an entire workout once or even twice a week.
Different course, same gears
Several studies have shown that riding with an abnormally slow cadence impairs running out of T2. If you're doing a hilly late-season race such as Ironman Wisconsin or Ironman 70.3 Austin, make sure your bike has an easy climbing gear that will allow you to spin your preferred cadence up steep climbs instead of forcing you to grind against a gear that is too big.
Count the number of teeth on the largest gear in your cassette. If it is 25 or fewer, consider swapping your cassette for a version with 27 or 28 teeth. For about $100, you'll buy yourself a more comfortable bike ride. Using a cassette with an easy climbing gear is especially important if you ride a standard crank (it will say "53" somewhere on the big ring) instead of a compact (which will say "50").
Suffering even one ride without a fit
By now you've no doubt heard the importance of triathlon bike fit, and it really can't be overstated. All the aero gear in the world is worthless if you have to get out of the aerobars to stay comfortable. If you can't sit still in the aero position for a long, hard ride, find a local bike fitter specializing in triathlon and get help.
Over-packing for race day
It takes enough crap just to swim, bike, run and transition; don't bog yourself down with unnecessary extras. Leave your standard cycling stuff at home and use your aero and race gear to warm up and to ride the day before if you're traveling to a race. Bring the necessities such as electrical tape, a multi-tool, something to sip on before the race, maybe a little food and a warm set of clothing. Leave the extras at home.
Turning your bike into a buffet
Whether you're racing long course or short, there is no excuse for taping 2,000 calories to your frame. There are aid stations for a reason. Instead of messing up the aerodynamics of your finely tuned bike, train with the drink offered on race day. That way you will always have the calories, electrolytes and fluids you need should anything fall off your rolling schmorgesborg.
Ignoring your housing
Derailleurs get all the glory, but they are really a secondary contributor to shift performance. The shifters themselves are the key component, and they can only actuate the derailleurs properly if the connection between the two—the cables and housing—is functioning smoothly.
Road gunk gradually accumulates inside the housing and gums up the cables. Once that happens, no component group in the world no matter how expensive can shift crisply.
It isn't a sexy upgrade, but regularly swapping old cables and housing for a new set is one of the best investments you can make to improve your component function. Swap housing about once a year, and replace the cables twice.
Keeping your wetsuit dry
Throw a wetsuit on and you're going to swim faster, even without training in it. But no matter how flexible or form-fitting a suit may be, every wetsuit still creates arm resistance. Whether you have access to an open water swimming spot or not, make sure to do several swims in your wetsuit before race day. Your shoulders and triceps will thank you. Even just logging 500 yards at the beginning of a pool workout once a week makes a big difference.


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Findings for PPC in Odessa
Odessa Ranks Amongst Least Expensive Markets for Google Adwords in USA
SEP's ongoing research into PPC Campaigns has revealed that Odessa was the 273rd least expensive city in USA in keyword bids in Google Adwords for the month of April 2015. Odessa also ranks amongst the least expensive cities in Texas, ranking as number 30th. In the study, San Buenaventura ranked as the most expensive city in the country, while Manchester ranked as the least expensive city.
Google Adwords Keyword Prices 61% Lower in Odessa than Midland
SEP's research also tracks Google Adwords price changes and trends in cities across Canada and the U.S. Recent data shows that average prices in Odessa are 61% lower than in Midland. The average price of a click in Odessa is $4.68.
This price differential is expected however, as Midland has a larger population than Odessa.
For better comparison of prices, we also compared prices with another city with a similar population, Rochester, and found the average price of a click in Odessa was 43% lower than in Rochester.
The Price Rank shows how expensive keywords are in certain industry and segment relative to other cities in a country, region and province.


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Salsa, Ballroom Dance Classes: Spring 2013 IC, Preregister!Contributed by Kurt Lichtmann on 11/11/2012 How to find SPRING 2013 Salsa and Ballroom Classes to Pre-Register on Homerconnect! TERM SELECTION: SPRING 2013 (not PT) TITLE: Salsa Dance |


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This week we take a look at one of the two primary jurisdictional means by which a case may be brought in federal court – id est federal diversity jurisdiction. In addition, we examine what has been referred to as the "Gaping Hole Problem" in diversity jurisdiction that arises from the potential exercise of supplemental jurisdiction. We also examine the approach the D.C. Circuit took in In re Lorazepam & Clorazepate Antitrust Litigation in handling a case in which the presence of nondiverse parties threatened to defeat federal diversity jurisdiction.
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