1. 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.

2. Rett Syndrome Information And Resources rett syndrome International rett syndrome Assoc (IRSA) offers family resources and 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 Website last updated Wednesday April 21, 2004 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 20th 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 InterRett - IRSA 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

3. Home rett syndrome is a complex neurological disorder. It affects mainly girls. Although present at birth, it becomes more evident during the second year. http://www.rettsyndrome.org.uk/

Rett syndrome is a complex neurological disorder. It affects mainly girls . Although present at birth, it becomes more evident during the second year. It could occur in any family at any time. Something goes wrong with the genetic makeup of the cells which become the baby. People with Rett syndrome are profoundly and multiply disabled and highly dependent on others for their needs throughout their lives. We are a national charity . We offer information, advice, practical help, friendship and support to people with Rett syndrome, their families and carers We rely almost entirely on donations and grants for our income R egistered charity no: 327309

4. Rett Syndrome - Description, Links And Books 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. 1998 BLED, SLOVENIA. rett syndrome. rett syndrome. rett syndrome. rett syndrome And Epilepsy. rett syndrome 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

5. Rett Syndrome Fact Sheet rett syndrome fact sheet prepared by the National Institute of Neurological Disorders 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.

6. Center For The Study Of Autism 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 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.

7. Our Rett Syndrome Web Site 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

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

Rett Syndrome Race for the cure! Please see the "The Great Mississippi River Race for Rett Syndrome" at http://www.dreamkeeper.org to see the World's longest non stop canoe/kayak race for Rett Syndrome. Or check out "The Great Mississippi River Race for Rett Syndrome" at http://www.mississippichallenge.org to see how we smashed a World Record for best time down the Mississippi River - The Mississippi Challenge for Rett Syndrome and Leukodystrophy! This Time It's Personal.....

9. Rett rett syndrome. In the spring of 1965, Andreas Rett observed two young girls sitting on their mothers Beyond saying that rett syndrome is a neurologic disorder, there is little http://home.coqui.net/myrna/rett.htm

Rett Syndrome In the spring of 1965, Andreas Rett observed two young girls sitting on their mothers’ laps in his waiting room. Like mirror images of each other, they were petite and profoundly disabled and were wringing their hands together incessantly. After searching hi files, Dr. Rett found six other girls with a similar clinical picture and wrote the first description of the syndrome that now bears his name. Beyond saying that Rett syndrome is a “neurologic disorder”, there is little agreement as to whether to classify it as a “neurodegenerative disease” or a “mental retardation syndrome”. There is progression of symptoms, especially motor regression, over the life span, but whether this is due to ongoing degeneration or to secondary sequelae as in cerebral palsy or other neurobiological factors is not clear. It is also not clear if it is a genetic disorder. CLINICAL PRESENTATION. A girl with classic Rett syndrome appears normal to her parents for most of the first year of life. She may begin walking or may have mildly delayed motor milestones. Her social development appears normal, and she may begin to use and understand language. Sometime between 1 and 2 years, she experiences a regression of these skills. She stops playing with toys. She stops responding to the spoken word and stops using the few single words she has learned. She becomes withdrawn and loses interest in social interaction. She may stop walking. Purposeful hand use is replaced by stereotypic hand movements. The lost developmental skills are never recovered, and she moves through at a level of profound mental retardation.

10. Rett Syndrome / Family Village Library organization dedicated to rett syndrome. The International rett syndrome Association disseminates timely, accurate, objective information on rett syndrome throughout the world to 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 Google 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/ A comprehensive worldwide organization dedicated to Rett syndrome. The International Rett Syndrome Association disseminates 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 and 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 Where to Go to Chat with Others RETT Net An ongoing discussion for Doctors, Researchers and parents of Rett Syndrome girls. Club Rett Our Mailing List is for ADULTS who have a Rett Syndrome Angel in their life. It is a place to share ANYTHING you want to talk about. Rett Syndrome Parents A place for Rett Syndrome Parents to talk about- discuss and share thoughts- idea's and questions about Rett Syndrome.

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. NINDS Rett Syndrome Information Page rett syndrome information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke. More about rett syndrome, Studies with patients, 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.

13. Rett Syndrome Link to rett syndrome Association International rett syndrome Association http//www.rettsyndrome.org Links to other supportive organizations http://www3.nb.sympatico.ca/ipenner/rs.html

Experiences with RS Perhaps some of our experiences will be helpful to other parents. Yvonne Fredericton, New Brunswick, Canada We will add information as time and energy permits. For now we have included a page on school integration (taken from Irma's book, #1 below) and a page on allergies and behavior. T HE R IGHT TO ... The Story of Yvonne by Irma Penner Integrated at Last Chapter 15 from Irma's book Eating Disorder, Constipation and Food Allergies - December, 2000 E-mail: ipenner@nb.sympatico.ca Phone: (506) 452-2136 Back to: Penner Home Page Link to Rett Syndrome Association: International Rett Syndrome Association http://www.rettsyndrome.org Links to other supportive organizations: Association for Community Living http://www.cacl.ca/ You are visitor no.: since Dec 7, 2000 If you have any comments or questions about this website, please contact Irma Penner ipenner@nb.sympatico.ca Updated Dec 20, 2003

14. Living With Rett Syndrome Welcome to Living With rett syndrome. This page will always be under construction as unfortunately rett syndrome is a work in progress . http://members.tripod.com/~conniecoughlin/livingwrs.html

var cm_role = "live" var cm_host = "tripod.lycos.com" var cm_taxid = "/memberembedded" 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.

15. Rett Syndrome Parent rett syndrome Parent. This page is to help locate other pages concerning rett syndrome. It will be here to help in the search of http://www.webspawner.com/users/rettsyndromeparent/

Rett Syndrome Parent This page is to help locate other pages concerning Rett syndrome. It will be here to help in the search of others that can help answer questions concering Rett. Pleas note that if you would like to send a donation to IRSA for aiding in research it is a tax free donation and to find out more on how to do this then please contact IRSA at 1-800-818-RETT. Club Rett Rett Angels IRSA Disease Resources ... Rett Syndrome Research Foundation Send E-Mail to: chsiemers1@yahoo.com This page created using the webpage creation facilities of Webspawner

16. 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

Advanced Browse Help About Us ... Careers Printer Friendly Email this page News News by e-mail News archive Magazine  ... News > 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.

17. International Rett Syndrome Association International rett syndrome Association Hosted by the International rett syndrome Association (IRSA), this site has over 500 pages of information about rett syndrome and the IRSA. International http://rdre1.inktomi.com/click?u=http://www.rettsyndrome.org/&y=02775D0797AC

18. What Is Rett Syndrome What is rett syndrome? rett syndrome is a complex neurological disorder. rett syndrome was first described in 1966 by the Austrian doctor, Andreas Rett. http://www.rettsyndrome.org.uk/What_is_RS.htm

What is Rett syndrome? Rett syndrome is a complex neurological disorder. It affects mainly girls . Although present at birth, it becomes more evident during the second year. It could occur in any family at any time. Something goes wrong with the genetic makeup of the cells which become the baby. People with Rett syndrome are profoundly and multiply disabled and highly dependent on others for their needs throughout their lives. Rett syndrome was first described in 1966 by the Austrian doctor, Andreas Rett. It is a complex neurological disorder, genetic in origin. It affects mainly girls. A few boys also have the condition. At least one in every 10,000 females born has Rett syndrome. It is believed to be the second most common cause of severe and profound learning disability in girls. A large proportion of people who have Rett syndrome have a mutation, or fault, on the MECP2 gene on the X chromosome.

19. Rett Syndrome Links rett syndrome Links. Translate this page into French, German, Italian, Portuguese or Spanish. rett syndrome rett syndrome Links. Similar Disabilities http://www.bundlings.com/rslinks.htm

Rett Syndrome Links Translate this page into French, German, Italian, Portuguese or Spanish. Rett Syndrome: Main RS Site Index Calorie Boosters Claire's Story ... Tips Rett Syndrome Links Similar Disabilities Angelman Syndrome This condition is very similar to Rett Syndrome, but can appear in boys, too Autism Some girls with Rett Syndrome originally had this diagnosis Cerebral Palsy Another common diagnosis for our girls Sensory Integration Dysfunction Some of our daughters started out with this diagnosis when they were very young Family Links Family Village Internet Resources for Special Children Our Kids Symptom Links Apraxia Ataxia Bruxism (Teeth Grinding) Infant Reflux ... Scoliosis Technology Links AbleNet, Inc. Edmark Corporation Enabling Devices Judy Lynn Software Toy Links Toys for Special Children Wisconsin First Step List of Toy Catalogs Adapted Clothing and Accessories Accessible Threads Adaptations by Adrian Snuggle Wraps (Arm Restraints) Special Clothes for Special Children ... Wearable Clothing Rett Syndrome Associations Worldwide Associação Nacional De Pais E Amigos Rett (Portugal) Associazione Italiana Sindrome di Rett Australian Rett Syndrome Association Belgian Rett Syndrome Association ... United Kingdom Rett Syndrome Association document.write('');

20. San Diego Run For Rett A 5k charity run/walk in San Diego. Includes volunteer opportunities, registration details, stories of children suffering from rett syndrome, http://www.sdrett.org

Our Girls Photos Video Other Events ... A letter from the Chairperson Join Us Come Run, Walk, Sponsor, or Volunteer for the love of our children with Rett syndrome! All proceeds will benefit the International Rett Syndrome Association. On September 25, 2004, family members, friends, and volunteers will meet at Mission Bay, San Diego, to raise money for the love of our children with Rett syndrome. We need Sponsors ! If you know a company that would like to sponsor the San Diego Run for Rett, please contact Veleria Fabiszak at (619) 253-6928 or Veleria@sdrett.org Visit our sponsors page for more information. Please help us raise money for research, awareness, family support and a cure for Rett syndrome. For sponsorship opportunities, please visit our Sponsors page We Need You In 1999, the mutation in the gene that causes Rett syndrome was discovered. Since then, researchers from around the world have come on board to search for treatments and, ultimately, a cure. We need your help to continue their research, raise awareness, and support families of children with Rett syndrome. You don't have to be a runner to be involved. The San Diego Run for Rett is for everyone! You can walk the 8k, wheel the 8k, run the 8k, or walk the 1 mile fun walk. You can offer your help by volunteering, sponsoring your company's services, or by making a monetary donation. Every little bit helps and every offer of help is welcome!

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