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Rett Syndrome:     more books (38)

The Rett Syndrome handbook: In words you can understand from those who understand by Kathy Hunter, 1999 Rett Syndrome and Autism (Issues in Neurology Series) by Richard H. Haas, Isabelle Rapin, et all 1988-10 Rett Syndrome (Clinics in Developmental Medicine) by Hagberg, 1993-08-20 The Rett Syndrome Handbook by Kathy Hunter, 2007 Opitz: Rett Syndrome by JM OPITZ, 1986-10-01 Rett syndrome (SuDoc HE 20.3520:R 31) by U.S. Dept of Health and Human Services, 2000 Rett Syndrome: A case study (Carson-Newman College) by Amanda Sendelbach, 2000 Developments in Rett Syndrome Research: An article from: The Exceptional Parent by Adrian Bird, 2001-06-30 The RETT Syndrome handbook, in Words You Can Understand from Those Who Understand by Kathy Hunter, 1999 The Rett Syndrome Research Foundation: An article from: The Exceptional Parent Child neurologists honor International Rett Syndrome Association : An article from: The Exceptional Parent by Anonymous, 2002-12-31 Rett Syndrome: A Brief Update and Special Features in Adults : An article from: The Exceptional Parent Pathways to Learning in Rett Syndrome by Jackie Lewis , 1998-04-23 Pervasive developmental disorders: An entry from Thomson Gale's <i>Gale Encyclopedia of Genetic Disorders, 2nd ed.</i> by Rebecca, PhD Frey, 2005

lists with details

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

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. 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
    
    Extractions: 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.

24. 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

25. 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
    
    Extractions: 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.

26. 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/
    
    Extractions: 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: 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.

27. 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

28. 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
    
    Extractions: 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.

29. Rett Syndrome Resources
    Facts and various information containing links.Category Health Conditions and Diseases rett syndromerett 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

30. 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/
    
    Extractions: 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

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

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

33. 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

34. 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
    
    Extractions: 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)

35. Internet Resources For Special Children (IRSC) - Worldwide Resource For Disabili
    Neurological Disorders rett syndrome. IRSC Home Neurological Disorders rett syndrome. Rett Angels http//www.rettangels.org rett syndrome site.  
    http://www.irsc.org/rett.htm

36. 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
    
    Extractions: 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

37. 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/
    
    Extractions: "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

38. 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

39. 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
    
    Extractions: 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

40. Rett Syndrome
    Irma Penner's book, The Right to BelongThe Story of Yvonne, describes the importance of community and school integration for children with severe disabilities.  
    http://www3.nb.sympatico.ca/ipenner/rs.html
    
    Extractions: 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

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