21. Rett Syndrome Links rett syndrome Links. Translate this page into French, German, Italian, Portugueseor 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 Capable Corners Family Village Internet Resources for Special Children Our Kids ... The Sibling Support Project Symptom Links Apraxia Ataxia Bruxism (Teeth Grinding) Constipation ... Scoliosis and Kyphosis Technology Links AbleNet, Inc. Edmark Corporation Enabling Devices Judy Lynn Software Therapy Links Deal Communication Centre Inc. Music Therapy Toy Links Toys for Special Children Jesana Ltd.

22. Researchers Find Rett Stuff The gene responsible for rett syndrome, a form of mental retardation in girls, has been identified. Researchers say a diagnostic tool is right around the corner. By Kristen Philipkoski. Wired News http://www.wired.com/news/news/story/22053.html

23. The Australian Rett Syndrome Study Welcome to the Australian rett syndrome Study Website! The Australianrett syndrome Study was established in 1993 to set up a facility 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

24. WE MOVE - Rett Syndrome rett syndrome (RS) is a progressive neurodevelopmental disorder thatoccurs almost exclusively in females. The disorder was originally http://www.wemove.org/rett.html

Rett syndrome (RS) is a neurodevelopmental disorder that occurs almost exclusively in females. RS progresses from the onset of symptoms to a more complete expression of the disorder; it does not worsen once the child has reached "symptomatic plateau." RS is not a degenerative condition. Rett syndrome was originally described by Dr. Andreas Rett of Austria in 1966. RS became known worldwide two decades later following publication of a report describing 35 affected girls from Sweden, Portugal, and France (Hagberg et al., 1983). Infants and children with RS usually develop normally until approximately age 6 to 18 months. They may then cease to acquire new skills and gradually or suddenly lose previously acquired abilities (developmental regression), such as conscious control of the hands (purposeful hand movements) and the ability to vocalize most sounds or words. Acquired hand and finger use is gradually replaced by repetitive, uncontrolled hand movements including hand clapping, mouthing, or "washing and wringing." Children may also develop autistic-like behaviors, an impaired ability to perform the motor movements required for coordinating walking (gait apraxia) and trunk movements, breathing irregularities during waking hours, seizures , feeding and swallowing difficulties, and growth retardation. Over time, certain motor control difficulties may worsen, whereas other associated symptoms may tend to stabilize or improve. Rett syndrome has been found to be caused by mutation in the gene encoding methyl-CpG-binding protein-2 (MECP2). This gene is located on the X chromosome and, in some cases, may be transmitted as an X-linked dominant trait. Other mutations may be sporadic in nature.

25. Rett Syndrome Update: Genetics And Diagnosis Subject rett syndrome update Genetics and diagnosis, Date 4/14/1999.rett syndrome Confirmation of Xlinked dominant inheritance http://www.wemove.org/emove/article.asp?ID=38

26. Rett Syndrome Resources, Research, Therapies, Families And More.... rett syndrome Research. Here are some websites with free information to helpyou get started on keeping up on current rett syndrome research .. http://www.rettsyndrome.net/rettresearch.html

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 Research Here are some websites with free information to help you "get started" on keeping up on current Rett syndrome research........ Rett Syndrome Research Foundation - The only rett syndrome charity that strictly funds biomedical research for Rett syndrome. Check their site for recent Rett syndrome research, testing, news, conferences and scientific seminars. The RSRFNewsAlert is an electronic newsletter which will be emailed to you about once a week with the latest research news, abstracts from new Rett publications, treatment and drug information, scientific meetings and fundraising events.  The RSRFlash is mailed out three times a year. Sign up to get it delivered to your home at no charge, or download it today! We Move - We Move is the Internet's most comprehensive resource for movement disorder information. A must see - excellent writeups on Rett to give to your doctors, therapists, and family members to help them get acquainted with a Rett overview. Written in laymen's terms.

27. MECP2 Data Retrieval Searchable database of known and novel MECP2 diseasecausing mutations and polymorphisms. From the International rett syndrome Association. http://mecp2.chw.edu.au/

RettBASE: IRSA MECP2 Variation Database Welcome We welcome you to the web-based IRSA Gene Variation Database (RettBASE). This database has been constructed by merging mutation and polymorphism data from the published literature pertaining to Rett syndrome and related clinical disorders, and by incorporating unpublished mutation and polymorphism data that have been submitted directly to us. RettBASE is updated on a very frequent basis manually by our curators to ensure the validity of the data being sent to us. A search engine has been constructed allowing you to perform searches of varying complexity, to obtain information relevant to your research or clinical questions. We invite you to: Browse mutation and polymorphism list for the sequence variation of your interest Perform simple or complex searches using our Boolean-based search engine Submit your unpublished sequence variation data by one of several means Alert us to published sequence variation data which we have not yet included Offer suggestions as to how we could enhance RettBASE to better meet your needs Acknowledgements Initial construction and maintenance of RettBASE could not have been possible without the very generous financial support of the International Rett Syndrome Association We would also like to acknowledge the New South Wales Rett Syndrome Association and the Rett Syndrome Australian Research Fund for their generous support of the NSW Rett Syndrome Research Team at the Children's Hospital at Westmead.

28. National Association For Child Development - Helping Children And Parents With P The National Academy for Child Development, Inc. is an international organization of parents and professionals dedicated to helping children and adults reach their full potential. The over 15,000 clients served by NACD have come to us with labels including Learning Disabled, Dyslexic, Distractible, ADD, ADHD, Hyperactive, Down Syndrome, Fetal Alcohol Syndrome, Williams Syndrome, Tourettes Syndrome, rett syndrome, Fragile X, Developmentally Delayed, PDD, Autistic, Cerebral Palsy, Brain Injured, Comatose, Retarded, Minimal Brain Dysfunction, Normal, Accelerated and Gifted. http://www.nacd.org

29. Rett Syndrome Awareness rett syndrome, What is It? What YOU Can Do To Help. ~OCTOBER is rett syndromeAwareness Month~. Register your RETT child or join the IRSA today! http://members.tripod.com/~angelwrett/rsawareness.html

R e t t S y n d r o m e W h a t i s I t Rett Syndrome (RS) is a neurological disorder seen primarily 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. To date,** there are 3042 reported cases with 2543 of them in the United States. While there is strong evidence of a genetic basis, the origin and cause of RS remain unknown. ** These statistics may not be correct as many parents have not registered their Rett child with the IRSA. To Register Your Child With The IRSA The child with RS usually shows an early period of apparently normal or near normal development until 6-18 months of life. A period of temporary stagnation or regression follows during which the child loses communication skills and purposeful use of the hands. Soon, stereotyped hand movements, gait disturbances, and slowing of the rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns which occur when awake. Apraxia (dyspraxia), the inability to program the body to perform motor movements, is the most fundamental and severely handicapping aspect of RS. It can interfere with every body movement, including eye gaze and speech, making it difficult for the girl with RS to do what she wants to do. Due to apraxia and lack of verbal communication skills, an accurate assessment of intelligence is difficult. Most traditional testing methods require use of the hands and/or speech, which may be impossible for the girl with RS.

30. Rett Syndrome Resources Facts and various information containing links.Category Health Conditions and Diseases rett syndrome......rett syndrome Resources. Online Guest Book! Welcome to an online RettSyndrome Guest Book! Please sign our guest book (below the http://www.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');

31. Rett Syndrome Europe Interactive Map Working together, rett syndrome Europe supports girls and women, theirfamilies and carers, disabled by this complex neurological disorder. http://www.rettsyndrome.com/

RETT SYNDROME EUROPE Rett Syndrome is a complex neurological disorder which occurs mainly in females and affects them throughout their lives. Sufferers are profoundly and multiply disabled and totally dependent on others for their needs. This site is sponsored by European support groups. It is dedicated to the support of such girls and women, their families and carers. CLICK ON THE COUNTRY OF YOUR CHOICE notice board minutes contact statutes ... help last update: march 2003 webmaster: johan delaere We apologise for the fact that for a long time our website has not been working. This was due to a problem that was totally outside our control. The Registration Company in the USA changed our website registration in error and without our knowledge. RSE meeting on saturday 24th May 2003 in Zagreb, Croatia Please contact RSE Secretariat DENIS GALEA Flat 5, Kensington Park Towers G. Borg Olivier Street St. Julians.STJ 15 MALTA dgalea@tcsmith.com

32. Rett Angels rett syndrome forum and online support group sharing personal stories and information. http://www.rettangels.org

Thursday - April 10, 2003 Current Member Profiles AbelOuellett admin Adriana AlliesMom ... Waifie About Rett Syndrome Rett Syndrome (RS) is a neurodevelopmental disorder believed to affect 1 in 10,000 female births (rarely seen in males). 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: Children with Rett Syndrome appear to develop normally until 6 to 18 months of age. 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 agree that RS is a developmental disorder rather than a progressive, degenerative disorder. The girls can live to adulthood, but most never regain the ability to use their hands or to speak. Cause: In 1999, a research team led by Dr. Huda Y. Zoghbi of the Howard Hughes Medical Institute and Houston’s Baylor College of Medicine identified the cause of Rett Syndrome as a defect in the MECP2 gene on the X chromosome.

33. The Family Village / Library / Rett Syndrome Library Q R. rett syndrome. Where to Go to Chat with Others. RETTNET An ongoingdiscussion for Doctors, Researchers and parents of rett syndrome girls. 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

34. Flower Family Web Site One family's experience with rett syndrome, Applied Behavioral Analysis and Discrete Trial Teaching. http://www.geocities.com/pflowerett

to our web site about our family and Rett Syndrome Now playing: "Hands" by Jewel, read words here Kelsey's Story Kelsey's Page Paula's Page ... Syndrome Association I'm Paula, I'm 44, and I've been married to Graham for 20 years.  We have 3 beautiful children, now ages 14, 8, and 6.  It's difficult to get a good picture of all 3 of our kids together because our middle child, Kelsey, has Rett Syndrome.  The 'short' of RS is that it is a neurologic, developmental disorder that is believed to affect almost exclusively females.  Its symptoms usually begin to manifest themselves sometime during the 2nd year of life, and one of the main hallmarks of RS is a 'hand-washing', wringing, clapping, tapping, or hand-mouthing motion.  For a much better and more thorough description of RS, check out IRSA's (the International Rett Syndrome Association) web site. By creating this website, it is my hope that Rett Syndrome can more and more, be brought to public attention - especially now that the GENE HAS BEEN FOUND - that the researchers out there will look at a beautiful little girl like mine and become interested enough to think that RS is an important disorder to study and to *cure*. Sign Guestbook View Guestbook visitors have accessed this site since 10/18/99 Email me Last Updated: 10/18/99 Leigh Ann Hawkins

35. RETT SYNDROME rett syndrome. International rett syndrome Association Our rett syndrome PageLiving With rett syndrome RETT Photo Gallery rett syndrome Links More. http://www.icondata.com/health/pedbase/files/RETTSYND.HTM

Pediatric Database (PEDBASE) Discipline: CNS Last Updated: 10/21/94 RETT SYNDROME DEFINITION: A neurodegenerative disorder characterized by psychomotor regression, stereotyped hand movements, ataxic gait, and autistic behaviour. EPIDEMIOLOGY: incidence: 1/12,000-15,000 girls age of onset: 5 to 18 months with a mean of 12 months risk factors: familial - sporadic, ? X-linked dominant chrom.#: Xp gene: ? females only PATHOGENESIS: 1. Background first described by Austrian paediatrician Dr. Andreas Rett in 1965 unknown etiology CLINICAL FEATURES: 1. Neurological Manifestations 1. Initial apparently normal prenatal and perinatal period normal psychomotor development in 1st 6-12 months of life 1. Psychomotor Regression begins between 5-18 months initially regression is rapid loss of gross motor skills loss of acquired purposeful hand movements between 6-30 months of age fine tremor of hands gait ataxia loss of ability to communicate loss of language skills beginning of autistic-like behaviour 2. Microcephaly initial normal head circumference with deceleration in size (i.e., acquired) 2. Later

36. Faculty: Glaze, D.G. Clinical Interests Pediatric Neurology rett syndrome, epilepsy, medically intractable seizures, infantile spasms. Neurophysiology children's sleep disorders. http://www.bcm.tmc.edu/neurol/faculty/dgg.html

Associate Professor M.D.(1974) Baylor College of Medicine Phone: 1-713-790-5046 (Blue Bird Circle Clinic) 1-713-790-3105 (Sleep Clinic) 1-713-798-RETT: (Rett syndrome) email: dglaze@bcm.tmc.edu Daniel G. Glaze, M.D. Clinical Interests: Pediatric Neurology: Rett syndrome, epilepsy, medically intractable seizures, infantile spasms. Neurophysiology: children's sleep disorders. Research Interests: Pathophysiology of Rett Syndrome; characterization of epilepsy, breathing abnormalities and sleep abnormalities in Rett Syndrome; growth-nutrition in Rett Syndrome. Pathophysiology and treatment of infantile spasms; experimental drug and non- medical approaches to refractory seizure disorders; studies of disordered sleep to help in the characterization of pathophysiology of other neurological disorders. Selected Publications: Armstrong, D.D., Dunn, J.K., Schultz, R.J., Herbert, D.A., Glaze, D.G., Motil, K.J. (1999)

37. Rett Syndrome Irma Penner's book, The Right to Belong-The Story of Yvonne, describes the importance of community Category Health Conditions and Diseases Personal Pages...... Links to rett syndrome International rett syndrome Association http//www.rettsyndrome.org.rett syndrome Research Foundation-http//www.rsrf.org/default2.htm http://personal.nbnet.nb.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 Links to Rett Syndrome: International Rett Syndrome Association http://www.rettsyndrome.org Rett Syndrome Research Foundation- http://www.rsrf.org/default2.htm 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 May 1, 2001

38. Great Mississippi River Race For Rett Syndrome, May 2001 Catch Another Great! Adventure at The Mississippi River Challengefor rett syndrome and Leukodystrohpy, May 2003, http://www.dreamkeeper.org/

Catch Another Great! Adventure at The Mississippi River Challenge for Rett Syndrome and Leukodystrohpy, May 2003 The Great Mississippi River Race for Rett Syndrome, May 2001 The Race Teams Flagship Double Helix ... The Mississippi River "Teams Survive World's Longest, Toughest Race " In true "Survivor" form, two teams of undaunted paddlers finished the longest non-stop canoe and kayak race in history when they arrived at where the Mississippi River enters the Gulf of Mexico, ending an epic journey of 2,348 miles that encountered everything from exhaustion to some of the worst flooding on record. Team Kruger, led by renowned paddlers Verlen Kruger and Bob Bradford, placed first in their specialized canoe at 24 days, 17 hours, 51 minutes. Team Double Helix, featuring the event's unique flagship kayak called the Double Helix, placed second at 26 days, 6 hours, 40 minutes. Team Alaska, showing true perserverance and dedication, replaced

39. Rebekahs Page Personal story of Rebekah through 3 years of tests, diagnosis, and finally news of the gene being found. http://www.angelfire.com/grrl/rebekahspage/index.htm

We have moved please click here and see our new site. seconds click here

40. Rett Syndrome Canoe/Kayak Marathon, May 2001 Adventure at The Mississippi River Challenge for rett syndrome and Leukodystrohpy,May 2003, rett syndrome. rett syndrome can affect any child in any family. http://www.dreamkeeper.org/rett_syndrome.html

Catch Another Great! Adventure at The Mississippi River Challenge for Rett Syndrome and Leukodystrohpy, May 2003 The Great Mississippi River Race for Rett Syndrome, May 2001 The Race Teams Flagship Double Helix ... The Mississippi River Rett Syndrome Rett syndrome is a severe neurological disorder that randomly strikes 1 in 10,000 to 15,000 young girls within the first two years of life. Rett Syndrome affects males also but few are known to survive to pregnancy Rett Syndrome can affect any child in any family. 99.5% of those affected by Rett syndrome have no case history in their family with Rett syndrome. After an apparently normal 6-18 months of development, a typical Rett syndrome child begins to suffer the loss of speech and the ability to walk normally. This is soon followed by: the loss of purposeful hand use which is often replaced by hand wringing or clapping decreased growth (height and head size) breathing dysfunctions (over 14 breathing dysfunctions have been identified to date) seizures, seizure like behavior and tremors

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