1. Rett Syndrome Information And Resources rett syndrome International rett syndrome Assoc (IRSA) offers family resources and support, research, information, discussion forum, publications, http://www.rettsyndrome.org/

What is Rett Syndrome? Meet some Rett angels Genetics Research ... Make a Donation Website last updated Thursday September 08, 2005 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 21st 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 $55 million in medical research and directly funded $4 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

2. Rett Syndrome Research Foundation: Welcome 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

Search RSRF: Strollathons Galas/ Festivals CIBC Miracle Day 2005 Donate Online via CharityGift Record $2.2 Million Committed to 2005 Research Awards RSRFlash, our free, quarterly newsletter. our electronic RSRFNewsAlert. "Research Update" Now Available Syndrome featured in New York Times ... Contact Us

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

Rett Syndrome Race for the cure! Cure Rett Now! 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! to find out more about Rett Syndrome from the Rett Syndrome Research Foundation (RSRF) - the largest private funder of Rett Syndrome research worldwide! Rett parents - want to meet other Rett parents on a free listserv? to join a Rett forum full of new and experienced Rett parents. This listserv is run by 2 Rett moms, and everyone is screened to make sure they have a valid interest in Rett Syndrome. Rett education - Want to join a listserv that discusses education issues for those who have Rett syndrome? to join a listserv full of good information and help and to talk with other parents and educators who can help! Knowledge is power!

4. NINDS Forwarding Page An in depth look at this syndrome prepared by the National Institute of Neurological Disorders and Stroke (NINDS). http://www.ninds.nih.gov/health_and_medical/pubs/rett.htm

NINDS has redesigned its website and the URL for the page you were seeking has changed. The new URL for this page is /disorders/rett/detail_rett.htm . Please update your bookmark to this page. You will be automatically taken to this page in 5 seconds, or you can click the link to go there now.

5. Home The rett syndrome Association UK, a registered charity, is dedicated to the support of girls and women, together with their families and carers, 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. Whilst there is variability in the severity of the disorder, most people with Rett syndrome are profoundly and multiply disabled and highly dependent on others for all their needs throughout life. 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

6. Center For The Study Of Autism The Autism Research Institute distributes an information packet on rett syndrome. 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. 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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8. 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 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

9. Rett Syndrome Information And Resources Information about rett syndrome and the IRSA. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

10. Rett Syndrome Fact Sheet National Institute Of Neurological More about rett syndrome Studies with patients Research literature Press releases. Disclaimer Search NINDS (help) Contact Us My Privacy http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

11. Rett Syndrome Information Page: National Institute Of Neurological Disorders And rett syndrome information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/rett/rett.htm

Accessible version Science for the Brain The nation's leading supporter of biomedical research on disorders of the brain and nervous system 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 You are here: Home Disorders Rett Syndrome NINDS Rett Syndrome Information Page Condensed from Rett Syndrome Fact Sheet 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? ... Organizations What is Rett Syndrome? Rett syndrome is a childhood neurodevelopmental disorder that affects females almost exclusively. Loss of muscle tone is usually the first symptom. Other early symptoms may include problems crawling or walking and diminished eye contact. As the syndrome progresses, a child will lose purposeful use of her hands and the ability to speak. Compulsive hand movements such as wringing and washing follow the loss of functional use of the hands. The inability to perform motor functions is perhaps the most severely disabling feature of Rett syndrome, interfering with every body movement, including eye gaze and speech. Is there any treatment?

12. Rett Syndrome Information Page National Institute Of Neurological Information in rett syndrome, treatment and prognosis. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

13. Rett Syndrome - Description, Links And Books , Links and Books......rett syndrome http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

14. Rett Syndrome The Autism Research Institute distributes an information packet on rett syndrome. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

15. 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

Printable Version Email this page Advanced Search News News by e-mail News archive ... Noticias en espa±ol 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.

16. 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

Race Results Our Girls Photos Platinum Sponsors ... Race Results Are Posted 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 April 9, 2005, family members, friends, and volunteers will meet at Mission Bay, San Diego, to raise money for the love of our children with Rett syndrome. San Diego Run For Rett Mission Bay - Tecolote Shores Saturday, April 9, 2005 7:00 a.m. - On-site late registration and Run For Rett packet pickup for pre-registered participants 7:30 a.m. - Resource Fair Begins 8:00 a.m. - Warm-up 8:30 a.m. - 8K Run and Wheelchair start 9:00 a.m. - Fun Run/Walk Directions 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 veleriafab@cox.net Visit our sponsors page for more information.

17. Rett Syndrome Research Foundation Welcome Promotes biomedical research for the treatment of rett syndrome, often misdiagnosed as Autism and Hypotonia. Offers detailed information, links http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

18. Our Rett Syndrome Web Site rett syndrome is a neurological disorder occurring primarily in girls, Diagnostic Criteria (Required for the recognition of rett syndrome) http://www.bundlings.com/irsg.htm

selectCSS(document.URL,1); Our Rett Syndrome Web Site 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

19. Our Rett Syndrome Web Site Our rett syndrome Web Site http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

20. Rett Syndrome Links rett syndrome Links. Similar Disabilities Angelman Syndrome This condition is very similar to rett syndrome, but can appear in boys, too http://www.bundlings.com/rslinks.htm

selectCSS(document.URL,1); Rett Syndrome Links 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(''); Rett Syndrome: Main RS Site Index Calorie Boosters Claire's Story ... Tips

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