21. 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

22. WE MOVE - Rett Syndrome rett syndrome (RS) is a progressive neurodevelopmental disorder that occurs almost exclusively in females. The disorder was originally described by Dr. Andreas Rett of Austria in 1966. rett syndrome. »rett syndrome Information for Patients and Caregivers rett syndrome Information for Medical Professionals at MDVU. rett syndrome Information for Patients and http://www.wemove.org/rett.html

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23. WE MOVE - Rett Syndrome rett syndrome (RS) is a progressive neurodevelopmental disorder that occurs almost exclusively in females. The rett syndrome. » Rett http://www.wemove.org/rett/

WE MOVE 204 West 84th Street New York, NY 10024 Tel: 800-437-MOV2 Fax: 212-875-8389 E-mail: wemove@wemove.org Rett Syndrome Rett Syndrome Information for Patients and Caregivers (see table of contents below) Rett Syndrome Information for Medical Professionals at MDVU Rett Syndrome Information for Patients and Caregivers Table of Contents Overview of Rett Syndrome Symptoms/Findings/Clinical Course Epidemiology Causes/Genetics ... References WE MOVE makes every effort to present medical information that is up-to-date and accurate. The material provided has undergone rigorous medical review. Information regarding the authors, editors, publisher, and medical reviewers of this material of the WE MOVE Web site is listed below. Medical science is constantly changing. Therefore, the authors, editors, and publisher do not warrant that the information in this text is complete, nor are they responsible for omissions or errors in the text or for the results of the use of this information. This information does not replace consultation with a physician. All medical procedures, drug doses, indications, and contraindications should be discussed with your personal physician. Medical Editor: Joy E. Bartnett

24. WE MOVE - Rett Syndrome - References rett syndrome (RS) is a progressive neurodevelopmental disorder that occurs almost exclusively in females. rett syndrome habilitation and management reviewed. http://www.wemove.org/rett/rett_ref.html

WE MOVE 204 West 84th Street New York, NY 10024 Tel: 800-437-MOV2 Fax: 212-875-8389 E-mail: wemove@wemove.org References Amir RE, Van den Veyver IB, Wan M, Tran CQ, Francke U, Zoghbi HY. Rett syndrome is caused by mutations in X-linked MECP2, encoding methyl-CpG-binding protein 2. Nat Genet. 1999;23:185-188. Comment in: Nat Genet. Anvret M, Wahlstrom J, Skogsberg P, Hagberg B. Segregation analysis of the X-chromosome in a family with Rett syndrome in two generations. Am J Med Genet. Budden SS. Rett syndrome: habilitation and management reviewed. Eur Child Adolesc Psychiatry. 1997;6(suppl 1):103-107. Burd L, Vesley B, Martsolf JT, Kerbeshian J. Prevalence study of Rett syndrome in North Dakota children. Am J Med Genet. Burford B, Trevarthen C. Evoking communication in Rett syndrome: comparisons with conversations and games in mother-infant interaction. Eur Child Adolesc Psychiatry. 1997;6(suppl 1):26-30. Cardaioli E, Dotti MT, Hayek G, Zappella M, Federico A. Studies on mitochondrial pathogenesis of Rett syndrome: ultrastructural data from skin and muscle biopsies and mutational analysis at mtDNA nucleotides 10463 and 2835. J Submicrosc Cytol Pathol.

25. 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.

26. NACD - National Association For Child Development - Home 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

The National Association for Child Development is an international organization of professionals and parents dedicated to helping children and adults reach their full potential through the implementation of innovative individual programs, research, and the dissemination of information. 549 25th Street Ogden, Utah 84401-2422 USA Phone: (801) 621-8606 Fax: (801) 621-8389 Send us your comments here

27. Rett Syndrome Europe Interactive Map Working together, rett syndrome Europe supports girls and women, their families 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: january 2004 webmaster: johan delaere ZAGREB 2004 MAY 22-23 Second European conference for families, carers and professionals Click here for programme and registration form In memory of Katalin Borvendeg Click here

28. Internet Resources For Special Children (IRSC) - Worldwide Resource For Disabili rett syndromerett syndrome, research index site with links for disability users, 1000 s of search engines and with live java games, chat s, kids internet, irc, jobs, news http://www.irsc.org/rett.htm

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

Wednesday - June 02, 2004 Guest Book Country listing of our current members - Make sure your country is included! Register Today! Argentina, Australia, Brazil, Canada, Finland, Greece, Israel, Japan, Jordan, Mexico, New Zealand, Peru, Philippines, Singapore, South Africa, United Arab Emirates, United Kingdom, USA, Venezuela, Current Member Profiles AbelOuellett admin Adriana Alexandra ... Wanna 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.

30. ~How I Cope With RETT Syndrome~ ~Coping with rett syndrome~. After living with Rett for almost 20 years, I ve had to learn how to manage the day to day stresses involved in having a Special http://members.tripod.com/~conniecoughlin/coping.html

var cm_role = "live" var cm_host = "tripod.lycos.com" var cm_taxid = "/memberembedded" Some Inspirational Places I've Found The Trouble Tree an inspirational story Things that I have learned poem Special Pages Poems Childrens Poem, Prayers, Lullabyes and Songs very restful Christian Inspiration HE is always there for us nobody knows but mother neat reminder Inspiration for Nurses Reflections nice What do angels look like good question Yesterday, Today and Tomorrow excellent reminder Appreciate the days you have good advice Inspiration Pointe stories Waterfall very restful Quotes Differently -Abled Poems Differently -Abled Fun Links one of my pages Prayer List for you to post a prayer The Child Within acknowledging the child within each of us Harbour Lights very relaxing UNDER ANGEL WINGS dedicated to all lil Angel's (big or small) in need of a special prayer AngelicLove inspirational message On the Humorous Side Warning ! I Shall Wear Purple C o p i n g w i t h R E T T S y n d r o m e After living with Rett for almost 20 years, I've had to learn how to manage the day to day stresses involved in having a Special Needs daughter. Dani (my daughter), is not a problem herself (now), but her condition, Rett syndrome, does pose challenges I never dreamed I would face, much less have to contend with on a daily basis. So, I have learned that the most effective way to deal with all that RETT entails is to have a huge sense of humor. Sometimes mine may border on the "sick" side, but it does help me get through those baaaad RETT days. Abraham Lincoln said it best:

31. 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 45, and I've been married to Graham for 21 years.  We have 3 beautiful children, now ages 15, 9, and 7.  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

32. Great Mississippi River Race For Rett Syndrome, May 2001 Catch Another Great! Adventure at The Mississippi River Challenge for 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

33. 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)

34. 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

35. Epilepsy Action: Rett Syndrome rett syndrome. rett syndrome is a condition which occurs in 1 in 1015,000 girls. Girls with rett syndrome develop normally for the first 6 months of life. http://www.epilepsy.org.uk/info/rett.html

HOMEPAGE EMAIL NEWSLETTER EPILEPSY INFORMATION MEMBERSHIP AND SERVICES ... APPLE UK STORE Epilepsy Action is the working name of British Epilepsy Association and is a Registered Charity (Registered in England No. 234343) Rett Syndrome Rett Syndrome is a condition which occurs in 1 in 10-15,000 girls. It does not appear to affect boys. The cause in unknown and it usually does not affect more than one girl in a family. Symptoms Girls with Rett Syndrome develop normally for the first 6 months of life. Between 6 months and 2‡ years (often between 6 - 18 months), their development slows up and may even go backwards. They become less interested in play, lose the ability to speak and possibly become irritable. They stop using their hands purposefully and they may, instead, begin to move their hands in a repetitive way, often with hand-wringing movements. Epilepsy is not uncommon, but usually begins after the age of 2 years. The seizures may be of various types including generalised tonic clonic, absences, myoclonic jerks, atonic and tonic. Often, more than one seizure types is present. Frequently, girls with Rett Syndrome have periods of rapid or slow breathing. These periods are sometimes associated with faints, which can be mistaken for epileptic seizures. Diagnosis The diagnosis of Rett Syndrome cannot usually be made with certainty until 3 - 5 years of age. This is because there are specific tests for the condition and the various features are sometimes not present until this age.

36. GeneReviews: Rett Syndrome Your browser does not support HTML frames so you must view rett syndrome in a slightly less readable form. Please follow this link to do so. http://www.genetests.org/query?dz=rett

37. 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

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38. RETT SYNDROME: Contact A Family - For Families With Disabled Children: Informati rett syndrome ASSOCIATION UK. rett syndrome ASSOCIATION SCOTLAND. rett syndrome Association Scotland 16 Fara Close Aberdeen AB15 6WN Tel 01224 663502. http://www.cafamily.org.uk/Direct/r30.html

printer friendly RETT SYNDROME home more about us in your area conditions information ... how you can help search this site Did you find this page helpful? yes no Rett syndrome is the clinical expression of the Rett disorder, a complex, genetic, neurological condition which affects far more girls than boys. Although signs may not be initially obvious, it is present at birth. It usually becomes more evident during the second year. People with Rett syndrome are almost always profoundly and multiply disabled and totally dependent on others for all their needs throughout their lives but severity may vary considerably. The baby with classic (easily recognised) Rett syndrome is usually placid and rather inactive. Learning may be slow but progress may reach the 9 or 12 month stage, occasionally beyond. Within a few weeks of birth the child's head size may fail to increase at the normal rate indicating failure of the brain to grow normally, although head size may remain within normal limits. Strange finger movements develop with the hands twisting and squeezing rather than reaching out to explore. Usually between one and three years the abnormal hand movements become more obvious and purposeful use is reduced or lost. During this time of regression the child may be agitated and distressed and breathing rhythm becomes irregular. Brain scans may confirm poor growth of the brain and after some months the electroencephalogram may show abnormal electrical activity in the brain cells (an electroencephalogram is the tracing which shows the electrical activity due to the neurones on the surface of the brain). There is disturbance of several substances involved in brain development and mature function. The diagnosis is confirmed by detecting a mutation (fault) on MECP2, a gene at the tip of the X chromosome. In just a few people with all or most of the clinical signs of Rett a mutation has not been found and it is possible that these people have a fault affecting control of MECP2 or of genes whose activity should be regulated by MECP2.

39. EMedicine - Pervasive Developmental Disorder: Rett Syndrome : Article By Joseph Pervasive Developmental Disorder rett syndrome rett syndrome (RS) is a neurologic disorder that affects many other systems. Internationally http://www.emedicine.com/ped/topic2653.htm

(advertisement) Home Specialties CME PDA ... Patient Education Articles Images CME Patient Education Advanced Search Link to this site Back to: eMedicine Specialties Pediatrics Pervasive Developmental Disorder: Rett Syndrome Last Updated: May 3, 2002 Rate this Article Email to a Colleague Synonyms and related keywords: PDD, RS, cerebroatrophic hyperammonemia AUTHOR INFORMATION Section 1 of 10 Author Information Introduction Clinical Differentials ... Bibliography Author: Joseph H Schneider, MD , Assistant Professor, Department of Pediatrics, Sections of Neonatology and Emergency Medicine, Baylor College of Medicine Coauthor(s): Daniel G Glaze, MD , Medical Director, Blue Bird Circle Rett Center; Associate Professor, Departments of Pediatrics and Neurology, Baylor College of Medicine Joseph H Schneider, MD, is a member of the following medical societies: American Academy of Pediatrics American Medical Association Texas Medical Association , and Texas Pediatric Society Editor(s): Carol Diane Berkowitz, MD , Executive Vice Chair, Professor, Department of Pediatrics, Harbor-University of California at Los Angeles Medical Center;

40. 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

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