41. The Coenraads Home Page A family's battle with rett syndrome, plus help links and information. http://www.coenraads.com/

Welcome to Coenraads.com Our 2001 Holiday picture: Chelsea, Tyler and Alex (click on the blue to email) Pieter Pieter@Coenraads.com Pieter's job at Greenfield Online: Monica Monica@Coenraads.com Monica's volunteer job at RSRF: Chelsea Chelsea@Coenraads.com Alex Alex@Coenraads.com Tyler Tyler@Coenraads.com An Appeal Letter for the Love of Chelsea Take a look at our photo galleries: Recent shots - Summer 2001 Spring 2001 Winter 2001 December 2000 ... Happy Mother's Day! Missing Pictures Under Construction 1999 First 4 Months 1998 Holiday Pictures Picture Archive (through 11/24/98) The Coenraads Brothers ... Grandparents Monica's Magnificent Media Milestones: People Magazine - Monica's letter gets published - May 24, 1999 Howard Stern Show - Monica calls in! Stamford Advocate Article - Music Therapy - April 13, 1999 Connecticut Public TV Recording Connecticut Post Article - Jan 10, 1999 Stamford Advocate Article - Front Page! - Dec 28, 1998 The Trumbull Times - Nov 19, 1998 Reflections: Short Story Hands - by Jewel I am the child Wishes in the Dark Rett Hands Here's a listing of a few of our favorite sites: Get to know Chelsea's challenge at the Rett Syndrome Research Foundation: RSRF The picture thumbnail pages are generated by: ThumbsPlus

42. Rett Syndrome rett syndrome. Also See National organizations information on genetic conditions or birth defects; Bluegrass for rett syndrome information; http://www.kumc.edu/gec/support/rett_syn.html

Rett syndrome International Rett Syndrome Association 9121 Piscataway Rd, Suite 2B Clinton, MD 20735 Phone: 800-818-RETT (7388) or (301) 856-3334 Fax: (301) 248-9049 Web site: http://www.rettsyndrome.org E-mail: irsa@rettsyndrome.org Includes links to organizations in Australia, Belgium, Denmark, France, Japan, Netherlands, Sweden Research for Rett, Inc. P.O. Box 471 Linwood, New Jersey 08221 Phone: 1-800-422-RETT E-mail: adnet@cnw.com Also See: National organizations information on genetic conditions or birth defects Bluegrass for Rett Syndrome information Rett Syndrome Center for the Study of Autism To locate a genetic counselor or clinical geneticist in your area: Professional Genetics Societies Genetic clinics, centers, departments Genetic Societies Clinical Resources ... Search Genetics Education Center Debra Collins, M.S. CGC , Genetic Counselor, dcollins@kumc.edu This site subscribes to the principles of the HONcode (Health on the Net, Code of Conduct for Medical and Health Web Sites) of the Health On the Net Foundation

43. Kim Johnson - The Rett Syndrome Experience The deterioration associated with rett syndrome has left her severely dyspraxic and without speech. Personal story. http://home.vicnet.net.au/~dealccinc/Kim1.htm

KIM JOHNSON Introduction Kim Johnson has Rett Syndrome , a condition unrecognised in the 1960s when she was born. Although she developed normally for nearly two years, the deterioration associated with Rett Syndrome has left her severely dyspraxic and without speech. Kim lives in Melbourne, and completed the final year of secondary school at the end of 1997, ten years after DEAL Communication Centre showed her how to communicate by typing with a head-pointer. From that time her family and friends gradually came to know a totally new Kim, who has led them all into uncharted waters. Hi! I'm Kim's mother, Jill. Kim would like me to tell you something about herself, as her communication is very slow and tires her rapidly. She also wants to tell you quite a bit herself, though, and her words will be found typed in UPPER CASE BOLD . Often you'll be able to tell by the style who is doing the talking; Kim's expression is very concise, as she has a lot of time to think but not much energy to type. Rosie Crossley has described it in her latest book " Speechless " as ...."as if she were writing a telegram and being charged by the word"!

44. Index Introduction to rett syndrome and Angelman Syndrome, a personal view, photographs, and links. http://geocities.com/melicamay

Welcome To Touched By An Angel Click angel to enter

45. Coping With Rett Syndrome News , Coping With rett syndrome. A debilitating disorder that strikes only girls, rett syndrome challenges physicians, patients, and families. http://www.ars.usda.gov/is/AR/archive/feb99/rett0299.htm

Advanced Browse Help About Us ... Careers Printer Friendly Email this page News Magazine  Subscriptions Editorial Staff ... News > Coping With Rett Syndrome A debilitating disorder that strikes only girls, Rett Syndrome challenges physicians, patients, and families. One symptom of Rett Syndrome is profound growth failure. Pediatrician and nutritionist Kathleen J. Motil with the USDA- ARS Children's Nutrition Research Center (CNRC) in Houston, Texas, is finding innovative ways to promote adequate nutrition, improve health, and enhance growth for some of these patients. Rett Syndrome occurs in 1 out of 23,000 live births. The onset is baffling: A healthy, active infant gradually stops developing normally. Typically, she regresses, losing her speech and walking skills, as well as the ability to play with toys. Repetitive hand-wringing and hand-washing movements are common, as are breathing abnormalities. Growth failure and muscle wasting may occur as early as 1 year of age. Motil and others have done studies suggesting this poor growth and wasting may be linked in part to the girls' need for special nutritional care. Andreas Rett, the medical doctor who first described this neurodevelopmental disease in 1966, noted the symptoms of wasting and slowed growth. Growth retardation is one of the factors supporting the diagnosis of Rett Syndrome. Other researchers, including Motil's colleagues, pediatric neurologist Daniel G. Glaze and nurse practitioner Rebecca J. Schultz, have reported in medical journals a deceleration in the rate of gain in head circumference, height, and weight.

46. Welcome To Debbie Schilling And Tom Bundy's Web Site! Personal stories and various links for rett syndrome information. http://www.bundlings.com/

selectCSS(document.URL,1); Bundlings.com: Main Events Family Fun ... Click here to see what's new! document.write(''); Bundlings.com: Main Events Family Fun ... Site Index

47. Esmerel's Collection Of Rett Syndrome Resources rett syndrome Resources. (Courtesy Resources. This page is dedicated to rett syndrome resources. This list is growing constantly. http://www.esmerel.org/specific/rett.htm

Rett Syndrome Resources (Courtesy of Esmerel: Home of Unicorn Quest : The Kids' Typing Tutor Game for One or Two Hands ) Welcome to another part of Esmerel's Collection of Disability Resources. This page is dedicated to rett syndrome resources. This list is growing constantly. If you know of any other resources or have suggestions, please email Heather. Australian Rett Syndrome Home Page Was established in 1993 to set up a facility for population based research in Australia Cure Rett Syndrome Now IRSA: International Rett Syndrome Assocation Over 500 pages of information about Rett Syndrome and the IRSA. Living with Rett Syndrome Our Rett Syndrome Home Page Profile of Rett Syndrome Rebekah's Page on Rett Syndrome ... Back to the Disabled Directory This page is maintained by Heather Last updated: May 23, 2000

48. Kimbo's Korner Story of a young woman living with rett syndrome. Many pictures and links. http://www.rettangels.org/members/kimberly

Kimberly's Korner Hello, my name is Kimberly. I am 18 years old. I am in a special needs class at Clay-Chalkville High School. I have Rett Syndrome . I am not able to walk or talk, but I am told that I say a whole lot with my eyes! Some of my favorite things are: music, TV, flirting My Photo Gallery - From 3 Months to 17 Years About Rett Syndrome Rett Syndrome (RS) is a neurological disorder seen almost exclusively in females. The prevalence of RS in females is approximately one in every 10,000-23,000 individuals and is found in all racial and ethnic groups worldwide. It is known that RS can occur in males but is extremely rare. It is named for Dr. Andreas Rett, an Austrian physician who identified the syndrome in 1966, although it remained unknown in the United States until 1983. Symptoms: RS has its clinical onset in most females between 6-18 months of age. Development to that time appears normal. They then enter a period of regression, losing speech and hand skills they had acquired. Most children develop seizures, repetitive hand movements, irregular breathing and motor-control problems.* A slowing of the rate of head growth also becomes apparent. Most researchers now agree that RS is a developmental disorder rather than a progressive, degenerative disorder as once thought. Survival into adulthood is now expected barring other illnesses or serious physical complications. Girls and women with RS can be expected to demonstrate a full range of emotions and enjoy satisfying social, recreational, and educational experiences at home and in the community.

49. Rett Center rett center, rett syndrom, kurser om rett syndrom, Rett Center, retts center, rett s center, retts syndrom, rett s syndrom, rett syndrome, retts syndrome http://www.jll.se/rett/

Rett Center rett center, rett syndrom, kurser om rett syndrom, Rett Center, retts center, rett's center, retts syndrom, rett's syndrom, rett syndrome, retts syndrome, rett's syndrome nationallt Centret samlar en flerprofessionell kompetens E-mail: rett.witt@jll.se

50. The DRM WebWatcher: Rett Syndrome A Disability Resources Monthly guide to the best online resources about rett syndrome. rett syndrome is a neurological disorder affecting primarily females. http://www.disabilityresources.org/RETT.html

Home Subjects States Librarians ... Contact Us The DRM WebWatcher Rett Syndrome Updated 4/2004 A B C D ... About/Hint/Link Rett Syndrome is a neurological disorder affecting primarily females. Children with Rett syndrome often exhibit autistic-like behaviors, such as repetitive hand movements, prolonged toe walking, body rocking, and sleep problems. Visit these sites for information about Rett syndrome. International Rett Syndrome Association Information about Rett syndrome, profiles of children with Rett syndrome, research news, information about the organization, and many links. Information about and the archives of the Internet discussion group RettNet is also included. Our Rett Syndrome Page The mother of a child with Rett syndrome has compiled an excellent page that includes basic information about Rett syndrome, getting support, events, newsletters from the Indiana Rett Syndrome Group, recommended readings and videos, links, and more. Rett Syndrome A fact sheet from the National Institute of Neurological Disorders and Stroke. Rett Syndrome Europe Links to Rett Syndrome organizations in western and eastern Europe.

51. GeneDis RTT Syndrome Mutations GeneDis Human Genetic Disease Database. rett syndrome. Scientific editors Dr. Avi GeneDis Website for rett syndrome. rett syndrome is a http://life2.tau.ac.il/GeneDis/Tables/Rett/rtt.html

GeneDis Human Gene tic Dis ease Database Rett Syndrome Scientific editors: Dr. Avi Orr-Urtreger Department of Human Genetics, Sackler Medical School, Tel Aviv University, Israel. Database coordinator: Dr. Rachel Kreisberg-Zakarin Bioinformatics Unit , G.S. Wise Faculty of Life Sciences, Tel-Aviv University, Israel. GeneDis Website for Rett Syndrome Rett Syndrome is a neurodevelopmental disorder characterized by loss of acquired skills after a period of normal development in infant girls due to mutations in the MeCP2 gene. The GeneDis web site for Rett Syndrome includes the wild type primary sequences of the MeCP2 gene and protein. Known mutations are incorporated in the gene and in the protein sequences using hyperlinks. Users can compare MeCP2 DNA or protein sequences to the wild type hyperlinked sequences present in GeneDis. The pairwise alignment output retains the hyperlinks, which enable the user to browse through the Rett Syndrome mutation table. The mutation table shows the location of the mutation on the cDNA, genomic DNA and protein sequences, the number of exon or intron, the severity of the disease associated with the mutation and a reference in which the mutation was first described. Go to "Search the Rett Syndrome Database with your primary DNA or protein sequence" Go to "GeneDis Homepage" Disease description Rett syndrome (RTT) ( OMIM 312750 ) is a neurological disorder characterized by a period of early normal growth and development followed by regression with loss of speech and acquired motor skills, stereotypical hand movements, and seizures (

52. UAB Health System | Unveiling The Mysteries Of Rett Syndrome Unveiling The Mysteries Of rett syndrome. Unveiling the Mysteries of rett syndrome. He also established the Blue Bird Circle rett syndrome Center at Baylor. http://www.health.uab.edu/show.asp?durki=55670

53. Rett Syndrome - Information / Diagnosis / Treatment / Prevention home neurological disorders rett syndrome rett syndrome. Information • Diagnosis • Treatment • Prevention. Subtopics rett syndrome Personal Pages, http://www.healthcyclopedia.com/neurological-disorders/rett-syndrome.html

Home Health cyclopedia All Topics by Category The Complete Guide to Health Care Resources on the Internet Health Conditions A-Z Gurus ... neurological disorders > rett syndrome Rett Syndrome Information / Diagnosis / Treatment / Prevention External links (marked with an arrow ) open in a new window. This site is a web directory and does not offer medical advice. We cannot take responsibility for information found on listed sites. This Page Subtopics Related Topics Medical Definition Health News ... Web Directory: Subtopics: Rett Syndrome > Personal Pages Related Topics: Genetic Disorders Mental Health/Disorders/Child and Adolescent/Mental Retardation/Causes Rare Disorders Medical Definition: University of Newcastle-upon-Tyne Medical Dictionary: "Rett syndrome" Health News: Search millions of published articles for news on Rett Syndrome Modern Medicine Aging The Ardell Wellness Report HealthFacts Medical Post Medical Update Men's Health and the National Women's Health Report Note: Subscription required to access the full text of articles. National Library of Medicine's MEDLINE/PubMed Database of Research Articles: Search PubMed Abstracts for "Rett+Syndrome" Search PubMed Central Full Text Articles from Life Sciences Journals for "Rett+Syndrome" Web Directory: Rett Syndrome Research Foundation Promotes biomedical research for the treatment of Rett Syndrome, often misdiagnosed as Autism and Hypotonia. Offers detailed information, links, studies, support groups, and information on the Rett Syndrome gene MECP2 recently discovered.

54. Kim Johnson - The Rett Syndrome Experience Kim Johnson has rett syndrome and has severe communication impairment. Kim Johnson has rett syndrome, a condition unrecognised in the 1960s when she was born. http://home.vicnet.net.au/~dealcc/Kim1.htm

KIM JOHNSON Introduction Kim Johnson has Rett Syndrome , a condition unrecognised in the 1960s when she was born. Although she developed normally for nearly two years, the deterioration associated with Rett Syndrome has left her severely dyspraxic and without speech. Kim lives in Melbourne, and completed the final year of secondary school at the end of 1997, ten years after DEAL Communication Centre showed her how to communicate by typing with a head-pointer. From that time her family and friends gradually came to know a totally new Kim, who has led them all into uncharted waters. Hi! I'm Kim's mother, Jill. Kim would like me to tell you something about herself, as her communication is very slow and tires her rapidly. She also wants to tell you quite a bit herself, though, and her words will be found typed in UPPER CASE BOLD . Often you'll be able to tell by the style who is doing the talking; Kim's expression is very concise, as she has a lot of time to think but not much energy to type. Rosie Crossley has described it in her latest book " Speechless " as ...."as if she were writing a telegram and being charged by the word"!

55. Rett Syndrome Affects Communication And Movement. rett syndrome is a severe disorder of the nervous system. Girls with rett syndrome need therapy to help them with movement and communication. http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Rett_syndrome_aff

56. Bbc.co.uk - Health - Conditions A-Z Rett Syndrome AZ Illnesses and Conditions. rett syndrome By Dr Trisha Macnair. rett syndrome is a complex neurological disorder. It is genetic in http://www.bbc.co.uk/health/conditions/rett_syndrome.shtml

@import url('/includes/tbenh.css') ; Home TV Radio Talk ... A-Z Index FRIDAY 11th June 2004 Text only BBC Homepage Health Home Lifestyle Home ... Conditions QUICK GUIDE A-Z Children's Ailments IN-DEPTH Addictions Allergies Arthritis Asthma ... Help Like this page? Send it to a friend! A-Z Illnesses and Conditions Rett Syndrome By Dr Trisha Macnair Rett Syndrome is a complex neurological disorder. It is genetic in origin and predominantly affects girls. Although signs may not be initially obvious, the condition is present at birth and becomes more evident during the second year, following an irreversible course. People with Rett syndrome are profoundly and multiply disabled and totally dependent on others for their needs throughout their lives. Typical signs include: initial normal development followed by stagnation after about 1 year and then regression with loss of early speech and hand movement skills, loss of walking or crawling, development of repetitive hand movements (hand-wringing), a stiff or clumsy gait, breathing problems, EEG (brainwave) abnormalities, and epilepsy (affects over 50%). The gene normally shuts off production of certain proteins in the brain. When faulty, overproduction of the proteins occurs, leading to damage to the nervous system.

57. HealthlinkUSA Rett Syndrome Links Searching For rett syndrome? Try Free Smileys Instead! Kanoodle.com. Click here for page 1 of rett syndrome information from the HealthlinkUSA directory. http://www.healthlinkusa.com/Rett_Syndrome.htm

58. Rett Syndrome Symposium SLOVENIA. rett syndrome. Organizers Bengt Hagberg (Sweden), Alan Percy (USA) Local organizer Milivoj Velickovic Perat (Slovenia). http://www2.mf.uni-lj.si/~rett/

PRE-CONGRESS SATELLITE SYMPOSIUM 11 - 12 SEPTEMBER 1998 BLED SLOVENIA RETT SYNDROME Organizers: Bengt Hagberg (Sweden), Alan Percy (USA) Local organizer: Milivoj Velickovic Perat (Slovenia) the scientific programme general information reply form Programme for the piano recital updated on 18 March, 1998 Page visited times since 24/12/1997.

59. HONselect - Rett Syndrome English rett syndrome, Autism-Dementia-Ataxia-Loss of Purposeful Hand Use Syndrome - Cerebroatrophic Hyperammonemia - Rett Disorder - Rett s Disorder http://www.hon.ch/HONselect/RareDiseases/C10.574.500.775.html

List of rare diseases: English Deutsch Language: MeSH term: Accepted terms: English: Rett Syndrome - Autism-Dementia-Ataxia-Loss of Purposeful Hand Use Syndrome - Cerebroatrophic Hyperammonemia - Rett Disorder - Rett's Disorder - Rett's Syndrome - Autism Dementia Ataxia Loss of Purposeful Hand Use Syndrome Français: RETT, SYNDROME - SYNDROME RETT Deutsch: Rett-Syndrom - Geistige Behinderung - Hirnatrophische Hyperammonämie - Syndrom mit Autismus, Demenz, Alexie und Verlust von zweckmäßigen Handbewegungen Español: SINDROME DE RETT - AUTISMO-DEMENCIA-ATAXIA-FUGA DEL SINDROME POR USO EXCESIVO DE LA MANO - HIPERAMONEMIA CEREBROATROFICA Português: SINDROME DE RETT - SINDROME DE AUTISMO-DEMENCIA-ATAXIA-PERDA DO USO APROPRIADO DA MAO - HIPERAMONEMIA CEREBROATROFICA HONselect ressources Definition: Yes Articles: Yes Images: No News: No Conferences: No Clinical trials: Yes Web sites: English Yes Français Yes Deutsch Yes Español Yes Português No Home About us Site map Feedback ... HONewsletter http://www.hon.ch/HONselect/RareDiseases/C10.574.500.775.html Last modified: Wed Apr 28 2004

60. HHMI News: Rett Syndrome Traced To Defective Gene "Silencer" rett syndrome Traced to Defective Gene Silencer . Finding that gene is the hardest thing I ve ever worked on, says HHMI investigator Huda Zoghbi. http://www.hhmi.org/news/zoghbi2.html

RESEARCH NEWS RESEARCH NEWS GRANT ANNOUNCEMENTS SCIENCE EDUCATION NEWS INSTITUTE NEWS ... Download this story in Acrobat PDF format. (requires Acrobat Reader Rett Syndrome Traced to Defective Gene "Silencer" "Finding that gene is the hardest thing I've ever worked on," says HHMI investigator Huda Zoghbi. A 14-year search for the cause of a rare genetic disease that strikes young girls has uncovered the first example of a human disease that is linked to a defective gene silencing mechanism. Rett syndrome (RTT) is a neurodevelopmental disorder seen in young girls that causes a sudden and permanent decline in mental capabilities. In 1985, HHMI investigator Huda Zoghbi , who was then a neurology fellow, published a clinical research report on Rett syndrome. Her initial encounter with the disorder had a lasting impact on her career. Shortly after seeing her first RTT patients, Zoghbi decided to change her career plans, switching from clinical medicine to a research position. Shortly after switching to research, she started the long, tedious search for the genetic causes of RTT. "Finding that gene is the hardest thing I've ever worked on," Zoghbi said in an interview. "It's the best case for the rewards of perseverance that I can think of."

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