1. Rett Syndrome Information And Resources Information about rett syndrome and the IRSA.Category Health Conditions and Diseases rett syndrome......rett syndrome International rett syndrome Assoc (IRSA) offers family resourcesand support, research, information, discussion forum, publications, and more http://www.rettsyndrome.org/

What is Rett Syndrome? New to our website Meet some Rett angels Genetics ... Links International Rett Syndrome Assn Care Today...Cure Tomorrow As the most comprehensive worldwide organization dedicated to Rett syndrome, the International Rett Syndrome Association proudly continues its nineteenth year providing important programs of: I nformation IRSA has disseminated timely, accurate, objective information on Rett syndrome throughout the world to people who need information and resources and to researchers who can make a difference R esearch IRSA has lobbied for nearly $35 million in medical research and directly funded $2.33 million in scientific research solely on Rett syndrome, including the important gene discovery and the new IRSA MECP2 Mutation Database and Rett Phenotype Database. S upport IRSA provides books and materials, annual conferences, regional seminars, quarterly newsletters, a website with more than 2 billion hits last year, RettNet, a toll free help line, a listening ear and a caring heart so you know you are not alone

2. RSRF - 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. http://www.rsrf.org

Welcome to the Rett Syndrome Research Foundation (RSRF) Online! The Rett Syndrome Research Foundation (RSRF) was created in the fall of 1999 by six parents of children with Rett Syndrome. Our mandate is clear: to find treatments and a cure for Rett Syndrome, a devastating neurological disorder that strikes primarily little girls, depriving them of communication and motor skills and rendering them completely dependent on others for every basic need. The recent discovery that mutations in the gene create Rett Syndrome's tragic cascade of symptoms has galvanized research in this field. Functioning as an epigenetic gene, is thought to silence other genes through the process of DNA methylation. The failure of this mechanism to turn genes off appropriately may have implications for a wide range of disorders. Researchers from fields as disparate as cancer and schizophrenia have become interested in the exploration of Historically Rett Syndrome (RTT) has been considered rare. However, as RTT research yields more information about the role of in neuronal maintenance and synaptic organization and plasticity, the incidence of related disorders may significantly redefine the frequency and scope of these mutations.

3. New Page 2 The rett syndrome Association UK, a registered charity, is dedicated to the support of girls and women, Category Health Conditions and Diseases rett syndrome...... http://www.rettsyndrome.org.uk/

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4. Center For The Study Of Autism The Autism Research Institute distributes an information packet on rett syndrome.Category Health Conditions and Diseases rett syndrome......rett syndrome. rett syndrome was first recognized by Andreas Rett in1966 and is a neurological disorder affecting primarily females. http://www.autism.org/rett.html

Rett Syndrome Written by Stephen M. Edelson, Ph.D. Center for the Study of Autism, Salem, Oregon Rett Syndrome was first recognized by Andreas Rett in 1966 and is a neurological disorder affecting primarily females. Autopsies on the brains of these individuals indicate a pathology different than autism; however, children afflicted with Rett Syndrome often exhibit autistic-like behaviors, such as repetitive hand movements, prolonged toe walking, body rocking, and sleep problems. The prevalence of Rett Syndrome is similar to the prevalence of autism; that is, estimates are between 1 in 10,000 births and 1 in 15,000 births. Typical characteristics: Normal development until 1/2 to 1 1/2 years Shakiness of the torso, and possibly the limbs Unsteady, stiff-legged gait Breathing difficulties (hyperventilation, apnea, air swallowing) Seizures (approximately 80% have epilepsy) Teeth grinding and difficulty chewing Retarded growth and small head Functioning level is usually between severely and profoundly mentally retarded Hypoactivity In most cases, there is a regression in cognition, behavior, social, and motor skills throughout their lifetime.

5. NINDS Rett Syndrome Information Page What is rett syndrome? rett syndrome is a progressive neurological disorder in which individuals exhibit reduced muscle http://www.ninds.nih.gov/health_and_medical/disorders/rett_doc.htm

National Institute of Neurological Disorders and Stroke Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system Browse all disorders Browse all health organizations More about Rett Syndrome Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health NINDS Rett Syndrome Information Page Reviewed 07-01-2001 Get Web page suited for printing Email this to a friend or colleague Table of Contents (click to jump to sections) What is Rett Syndrome? Is there any treatment? What is the prognosis? What research is being done? ... Related NINDS Publications and Information What is Rett Syndrome? Rett syndrome is a progressive neurological disorder in which individuals exhibit reduced muscle tone, autistic-like behavior, hand movements consisting mainly of wringing and waving, loss of purposeful use of the hands, diminished ability to express feelings, avoidance of eye contact, a lag in brain and head growth, gait abnormalities, and seizures. Hypotonia (loss of muscle tone) is usually the first symptom. The syndrome affects approximately 1 in every 10,000-15,000 live female births, with symptoms usually appearing in early childhood — between ages 6 and 18 months. Rett syndrome is caused by mutations (structural alterations or defects) in the MECP2 (pronounced meck-pea-two) gene, which is found on the X chromosome. Scientists identified the gene — which is believed to control the functions of several other genes — in 1999.

6. Our Rett Syndrome Web Site About rett syndrome. rett syndrome is a neurological disorder occurring primarily in girls, in which individuals exhibit http://www.bundlings.com/irsg.htm

Our Rett Syndrome Web Site Translate this page into French, German, Italian, Portuguese or Spanish. Rett Syndrome: Main RS Site Index Calorie Boosters Claire's Story ... Tips document.write(''); About Rett Syndrome Rett syndrome is a neurological disorder occurring primarily in girls, in which individuals exhibit reduced muscle tone, autistic-like behavior, stereotyped hand movements consisting mainly of wringing and waving, loss of purposeful use of the hands, diminished ability to express feelings, avoidance of eye contact, a lag in brain and head growth, gait abnormalities and seizures. Hypotonia (loss of muscle tone) is usually the first symptom. The syndrome was first recognized in 1966 by Dr. Andreas Rett, however it was not until a paper was published by Dr. Bengt Hagberg in 1983 that the disorder was made widely known in medical circles. The syndrome affects approximately 1 in every 10,000-15,000 live female births, with symptoms usually appearing in early childhood. Diagnostic Criteria: (Required for the recognition of Rett Syndrome) A period of normal development until between 6 - 18 months Normal head circumference at birth followed by a slowing of the rate of head growth with age (starting between 6 months and 4 years) Severely impaired expressive and receptive language Intellectual development appears to be severely delayed, but true intelligence is difficult to measure

7. The Australian Rett Syndrome Study The Australian rett syndrome Study was established in 1993 to set up a facility for population based research in http://www.general.uwa.edu.au/u/hleonard

Welcome to the Australian Rett Syndrome Study Website! The Australian Rett Syndrome Study was established in 1993 to set up a facility for population based research in Australia. Research elsewhere has often been based on case series which are not necessarily representative of the underlying population. The Australian Rett Syndrome Study operates from the Telethon Institute for Child Health Research, in West Perth in Western Australia. Information Publications History Media ... InterRett - IRSA Rett Phenotype Database

8. The Family Village / Library / Rett Syndrome rett syndrome. Who to Contact. Where to Go to Chat with Others http://www.familyvillage.wisc.edu/lib_rett.htm

Rett Syndrome Who to Contact Where to Go to Chat with Others Personal Accounts Learn More About It ... Search AltaVista for "Rett Syndrome" Who to Contact International Rett Syndrome Association 9121 Piscataway Rd Suite 2B Clinton MD 20735 301-856-3336 (Fax) E-mail: irsa@rettsyndrome.org Web: http://www.rettsyndrome.org/ Research for Rett, Inc P.O. Box 471 Linwood, New Jersey 08221 1-800-422-RETT E-mail: adnet@cnw.com Where to Go to Chat with Others RETTNET An ongoing discussion for Doctors, Researchers and parents of Rett Syndrome girls. To subscribe go to: Join the RettNet Personal Accounts Rae Anne: A Child With Rett Syndrome Annie's Own Page Living With Rett Syndrome Kim Johnson - The Rett Syndrome Experience ... Dani's Story, Rett Syndrome Learn More About It Rett Syndrome from The Center for the Study of Autism (CSA). Rett Syndrome, What is It? Web Sites The Web Page of the AFSR , the French Rett Syndrome Association International Rett Syndrome Association Home Page Our Rett Syndrome Page - Debbie Schilling, mother of a child with Rett Syndrome Back to [ Q - R Family Village Home Library Coffee Shop ... Information Last Updated 28-November-1999 by rowley@waisman.wisc.edu

9. Rett Syndrome Resources, Research, Therapies, Families And More.... Read a description of the condition's cause, symptoms and treatment, find pen pals for email support and browse links to other Rett sites. Americans may recognize rett syndrome as the disorder that the actress Julia Roberts has publicized. http://www.rettsyndrome.net/

The Mississippi River Challenge for Rett Syndrome and Leukodystrophy, May 2003 Rett Syndrome The Great Mississippi River Race for Rett Syndrome, May 2001 Home! ... This Site Rett syndrome is a severe neurological disorder that randomly strikes 1 in 10,000 young girls within the first two years of life. Americans may recognize Rett syndrome as the disorder that the actress Julia Roberts has publicized. Julia Roberts recently spoke about Rett syndrome before Congress in 2002, covered by a well televised CNN news report. She has also discussed it during numerous magazine interviews for the last several years. She also completed filming a Rett syndrome documentary called "Silent Angels" in 1999 that can be viewed on the Discovery Health Channel. What Are the Symptoms of Rett Syndrome?

10. Rett Syndrome - Description, Links And Books Diagnostic information, stories and links.Category Health Conditions and Diseases rett syndrome......rett syndrome (RS) is a neurological disorder seen almost exclusively infemales, and found in a variety of racial and ethnic groups worldwide. http://www.isn.net/~jypsy/rett.htm

Rett Syndrome (RS) is a neurological disorder seen almost exclusively in females, and found in a variety of racial and ethnic groups worldwide. First described by Dr. Andreas Rett, RS received worldwide recognition following a paper by Dr. Bengt Hagberg and colleagues in 1983. RS is most often misdiagnosed as autism, cerebral palsy or non-specific developmental delay. While many health professionals may not be familiar with RS, it is a relatively frequent cause of neurological dysfunction in females. The prevalence rate in various countries is from 1:10,000 to 1:23,000 live female births. Most researchers now agree that RS is a developmental disorder rather than a progressive, degenerative disorder as once thought. While there is strong evidence of a genetic basis, the origin and cause of RS remain unknown. Barring illness or complications, survival into adulthood is expected. DIAGNOSTIC CRITERIA Required for the recognition of Rett syndrome after the exclusion of other handicapping conditions * Period of apparently normal development until between 6-18 months * Normal head circumference at birth followed by slowing of the rate of head growth with age (3 mos-4 yrs) * Severely impaired expressive language and loss of purposeful hand skills, which combine to make assessment of receptive language and intelligence difficult

11. Rett Syndrome Association Of Illinois State organization that provides support for those affected by this neurological disorder that occurs predominantly in girls. Includes an events calendar, programs and services, and contacts. http://www.rettillinois.org/

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12. Rett Syndrome Fact Sheet An in depth look at this syndrome prepared by the National Institute of Neurological Disorders and Category Health Conditions and Diseases rett syndrome......rett syndrome fact sheet prepared by the National Institute of NeurologicalDisorders and Stroke (NINDS). What is rett syndrome? http://www.ninds.nih.gov/health_and_medical/pubs/rett.htm

National Institute of Neurological Disorders and Stroke Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system Browse all disorders Browse all health organizations More about a disorder Studies with patients Research literature Press releases Search NINDS... (help) Contact us My privacy NINDS is part of the National Institutes of Health Rett Syndrome Fact Sheet Get Web page suited for printing Email this to a friend or colleague Request free mailed brochure What is Rett syndrome? ... Where can I find more information? What is Rett syndrome? Rett syndrome is a childhood neurodevelopmental disorder characterized by normal early development followed by loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, gait abnormalities, seizures, and mental retardation. It affects females almost exclusively. The disorder was identified by Dr. Andreas Rett, an Austrian physician who first described it in a journal article in 1966. It was not until after a second article about the disorder was published in 1983 that the disorder was generally recognized.

13. Living With Rett Syndrome Connie's story with information and links.Category Health Conditions and Diseases Personal Pages......Welcome to Living With rett syndrome. This page will always be under constructionas unfortunately rett syndrome is a work in progress . http://members.tripod.com/~conniecoughlin/livingwrs.html

Welcome to Living With Rett Syndrome This page will always be under construction as unfortunately Rett syndrome is a "work in progress". I am making these pages in the hope that a parent who has just received the diagnosis and those who have lived with it for a while will find some peace in their minds and hearts in the turmoil of this diagnosis for their child. "I put my hand in yours and together we can do what we could never do alone. No longer is there a sense of hopelessness. No longer must we depend upon our own unsteady will power. We are all together now, reaching out for power and strength greater than ours. And as we join together, we find love and understanding beyond our wildest dreams." Helen Keller (source: Internet quotations) According to the International RETT Syndrome Association (IRSA) there are over 3000 reported cases of Rett in the world, with more than 2000 being in the United States. Because we are a "small" group (unlike other Special Needs organizations), it's difficult to get funding and recognition for research and other areas which affect the lives of these girls/women. My daughter, Dani was diagnosed with Rett when she was almost 11 years old.

14. Helping Girls With Rett Syndrome Improve Growth / February 23, 1999 / News From February 23, 1999. News from the USDA Agricultural Research Service. http://www.ars.usda.gov/is/pr/1999/990223.htm

Latest news Subscribe Helping Girls with Rett Syndrome Improve Growth By Jill Lee February 23, 1999 A long-running energy deficit may play a role in the hampered nutrition and growth caused by Rett Syndrome, according to studies by a pediatrician with the in Houston, Texas. Rett Syndrome, a debilitating disorder that strikes only girls, causes mental retardation and growth failure. There is no cure. The CNRC is a cooperative research facility run jointly by the USDA Agricultural Research Service and Baylor College of Medicine . The Rett studies were done by CNRC pediatric gastroenterologist Kathleen J. Motil, M.D, Ph.D.,and pediatric neurologist Daniel Glaze , M.D., of The Rett Center at Baylor College of Medicine. Motil, Glaze and colleagues compared the energy balancecalories consumed minus calories usedof healthy girls to those of children with Rett. The girls with Rett Syndrome had a positive energy balance, but it was lower than average for girls their age. It's possible this subtle, long-running energy deficit plays a role in slowing growth. Motil and her colleagues have been testing new therapies to help girls with Rett Syndrome. She has had success with a gastrostomy button. This surgically implanted device allows nutrients to be delivered to the body while the girls sleep. One patient, aged seven, increased her weight from 31 pounds to 48 in a year, allowing her to sit up for the first time.

15. Rett Syndrome Parent Contact and help for parents of a child with rett syndrome. http://www.webspawner.com/users/rettsyndromeparent/

Rett Syndrome Parent This page is being developed for parents of a child with rett syndrome. If you have questions please e-mail me and I`ll try and get you in touch with someone that can help. Please check out clubrett at the link below as you will find plenty of rett parents that can help in answering your questions concerning rett syndrome. I am a single father raising my child on my own that has rett syndrome which is a neurologial disorder that affects one out of ten to fifteen thousand girls of which there is no known cure to date, but there is ongoing research in an effort to find a cure for this dreaded disorder that affects so many families. There are links that will be of some help and will also link to other pages concerning rett syndrome especialy club rett where there are many many parents with a rett syndrome inflicted child that can answer questions you may have. Please if you`d like to make a tax deductible donation to IRSA for the purposes of helping with research to find a cure for these girls Please click on the International Rett Syndrome Association link below or give them a call at 1-800-818-RETT. It would be a very welcomed and needed donation that could help so many families with a rett syndrome inflicted child. Student PC'S Rett Angels Rett Syndrome Parent's Club International Rett Syndrome Assoc.

16. Rett Syndrome Resources Facts and various information containing links. http://expage.com/page/curerettnow

Rett Syndrome Resources Online Guest Book! Welcome to an online Rett Syndrome Guest Book! Please sign our guest book (below the bottom line) and write a short note about your connection to Rett syndrome. For more information on Rett syndrome, see http://www.rettsyndrome.net and http://www.dreamkeeper.org See you around the web! Clark and Mary rettrace@snet.net Sign Guestbook Read Guestbook This Time It's Personal..... oas_ad('Bottom');

17. Rett Syndrome Association UK About Rett The rett syndrome Association UK, a registered charity, is dedicated to the supportof girls and women, together with their families and carers, suffering from http://www.rettsyndrome.org.uk/AboutRett.htm

About Rett "An Introduction to Rett Syndrome" : a booklet is now available. "Rett Syndrome : Adolescence & Adulthood" booklet is also now available What is Rett s yndrome ? Rett syndrome is a complex neurological disorder. It affects mainly girls. Although signs of Rett syndrome may not be initially obvious, it is present at birth and becomes more evident during the second year. People with Rett syndrome are profoundly and multiply disabled and totally dependent on others for their needs throughout their lives. Why is it called Rett syndrome ? A syndrome is a group of features that occur together to characterise a medical condition. The pattern of characteristics associated with Rett syndrome was first described in 1966 by the Austrian doctor, Andreas Rett. Why do es Rett syndrome occur? Rett syndrome is genetic in origin. It is probably the most common genetic cause of profound intellectual and physical disability in girls, occurring more commonly than 1 in 10,000 female births. Recently it has been detected that a large proportion of people with Rett syndrome have a mutation, or fault, on the MECP2 gene on the X chromosome. How is Rett syndrome diagnosed Rett syndrome is now confirmed in most cases by carrying out a genetic test and also through clinical diagnosis – looking for signs and behaviours. Here are the typical signs.

18. Space Coast Early Intervention Center A nationally recognized notfor-profit pre-school and therapeutic center for families and children with Down syndrome, William's syndrome, rett syndrome, Cerebral palsy, Autism, P-4 Deletion syndrome, PDD and Apert syndrome. http://www.scbn.com/sceic.html

19. 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"!

20. ABA Resources For Recovery From Autism/PDD/Hyperlexia A collection of Internet and other resources helpful for parents of children with PDD, PDDNOS, autism, Asperger's Syndrome, hyperlexia, and rett syndrome. There are links to advocacy groups, anecdotal histories, and research sources. http://rsaffran.tripod.com/aba.html

ABA Resources for Recovery from Autism/PDD/Hyperlexia I am the father of a school-age child who has autism . This page is a collection of Internet and other resources which parents of children with PDD PDD-NOS autism Asperger's Syndrome ... hyperlexia , or Rett Syndrome may find useful. All the information concerns teaching methods that are a branch of applied behavior analysis (ABA) called behavioral intervention . One of the methods is discrete trial training. Some people (inaccurately) use the term "Lovaas method." We worked hard to get complete information, implement a program, and have our school system pay for it. My hope is to help spare other parents (and their children) some of the pain and wasted time we went through. Here are all the helpful resources I've found, with the best places to start marked Why don't the links work? When you click on a link it will appear in a different window Move this window over or use your browser Window menu if you don't see a selected link show up. Service Providers Private Schools Attorneys and Advocates Research ... What is ABA?

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