Turner Syndrome

  • About Turner Syndrome

    Turner syndrome is a chromosomal condition related to the X chromosome that alters development in females. Women with this condition tend to be shorter than average and are usually unable to conceive a child (infertile) because of an absence of ovarian function. Other features of this condition that can vary among women who have Turner syndrome include: extra skin on the neck (webbed neck), puffiness or swelling (lymphedema) of the hands and feet, skeletal abnormalities, heart defects and kidney problems. This condition occurs in about 1 in 2,500 female births worldwide, but is much more common among pregnancies that do not survive to term (miscarriages and stillbirths).

    NIH National Human Genome Research Institute

  • "Care of girls and women with Turner syndrome: a guideline of the Turner Syndrome Study Group" by Bondy CA; Turner Syndrome Study Group. Developmental Endocrinology Branch, National Institute of Child Health and Human Development NIH.
  • Turner Syndrome Genetics Home Reference NIH
  • Turner Syndrome: Research Activities and Scientific Advances at the NIH Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).
  • Turner Syndrome Clinical Studies by the National Institutes of Health (NIH), Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). Turner syndrome affects approximately 1 out of every 2,500 female live births worldwide. It embraces a broad spectrum of features, from major heart defects to minor cosmetic issues. Some individuals with Turner syndrome may have only a few features, while others may have many. Almost all people with Turner syndrome have short stature and loss of ovarian function, but the severity of these problems varies considerably amongst individuals.
  • Turner Syndrome Society of Canada was founded in 1981 by an individual with TS who wanted to share experiences and information. It provides support services for individuals with TS and their families and disseminates up-to-date medical information to families, physicians and the general public. [Canada]
  • Turner Syndrome Foundation of the U.S. The goal of the Turner Syndrome Foundation (TSF) is to support research initiatives and facilitate education programs that increase professional awareness and enhance medical care of those affected by Turner syndrome. Early diagnosis and comprehensive treatments over the lifespan may lead to a brighter and healthier future for all young girls and women with Turner syndrome.
  • Turner Syndrome Support Society (TSSS) The TSSS is run by volunteers all closely involved with Turner Syndrome. Membership is not compulsory but offers further benefits and the small membership fee enables TSSS to continue to offer support to others. The publication list gives details of information leaflets and guides that are available from the TSSS. [United Kingdom]
  • Turner syndrome – Wikipedia Turner syndrome or Ullrich-Turner syndrome (also known as "Gonadal dysgenesis":550), 45,X, encompasses several conditions in human females, of which monosomy X (absence of an entire sex chromosome, the Barr body) is most common. It is a chromosomal abnormality in which all or part of one of the sex chromosomes is absent or has other abnormalities (unaffected humans have 46 chromosomes, of which two are sex chromosomes). In some cases, the chromosome is missing in some cells but not others, a condition referred to as mosaicism or Turner mosaicism.

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Tell me and I’ll forget. Show me and I may remember. Involve me and I will understand.

— Confucius, 551-479 BC

  • AbilityPath provides a lifespan of educational, therapeutic, vocational, and family support services, to individuals with special needs and developmental disabilities in the greater San Francisco Bay Area.
  • Accessible Games and Puzzles for People with Disabilities
  • Audio Games AudioGames.net is a site dedicated to audio games (games based on sound) and blind-accessible games.
  • U. Games Australia Science Kits [Australia]
  • An accessible, server-based version of Monopoly! by ZanoSoft and RS Games.
  • Braille and Low Vision Monopoly by Reizen Inc. has extra large sized cards with braille and large print. The 20-in. square game board has a special overlay molded on to it so you will be able to identify all the spaces and the location of the properties. The perimeter of each game space is labeled in braille and in large print, which allows everyone – including the blind and those with low vision – to enjoy this game. Comes complete with brailled dice, brailled cards, brailled money and brailled game board.
  • Accessible Periodic Tables
  • From Children to Children (for Sign Writing Children and Teachers)
  • Signed Stories for Children:
    • ASL Stories Directory provides hundreds of free videos of ASL retellings of your child's or student's favorite books.
    • Signed Stories are multi-award-winning animated children's stories performed in American Sign Language (ASL). Then apps are accessible with narration, captions, and music. They're perfect for deaf children and for children with autism and dyslexia. Boost literacy and language skills with inclusive animated stories, a vocabulary builder and interactive learning games. Apps for schools and for families.
    • Signed Stories in British Sign Language (BSL) offers 15 series of 140 stories in BSL.
  • Skill: National Bureau for Students With Disabilities is a national charity promoting opportunities for young people and adults with any kind of disability in post-16 education, training and employment across the UK. [UK]
  • Special Needs Toys visual, auditory, tactile, vestibular, proprioception, motor, cognition, communication, socialization, independence toys and multisensory environments
  • K-12 Practice Math & English Language Arts dynamic, adaptive learning that feels like play
  • KidsHealth – a much-visited website for children's health and development.
  • LakiKid has sensory tools for home and classroom: fidget bands for chair legs, awareness toys, and weighted products. They also have a blog, support groups, and Ask an Autism Mom Live.
  • SpinMaster (formerly Marbles – the Brain Game) has specialty toys for critical thinking, coordination, memory, visual perception, word skills.
  • School Specialty Abilitations We know that working with children with special needs can be a challenge. Our Abilitations mission is to provide therapists, educators, and parents with the best practice products and solutions possible to ensure success. Our product line includes tools for positioning and mobility, fine motor, sensory processing and language/communication skills.
  • Wheelrace (in Danish) an educational game for school children aged 11-14 to teach kids what life is like when you are bound to a wheelchair. Rulleræs is a wheelchair simulation, designed as a low-tech 3D game designed to administrative experience and runs on older school computers. It is used for educational purposes in public school 4th-5th class and the goal is to give students a greater understanding of the problems of accessibility in an urban environment where there typically are many obstacles to a wheelchair user. There are not many going to think of a curb or a path with loose gravel can be difficult hurdles to cross for a wheelchair user. Developed for Vanførefonden and Danish Centre for Accessibility. Wheelrace is made by Kongo Interactive and Guppyworks. [Denmark]
  • Teaching Students with Visual Impairments educational materials
  • Camps and Recreations for Children with Special Needs (.pdf)
  • Hole in the Wall Gang Camps—>SeriousFun Children's Network:
    The SeriousFun Children's Network In 1988, actor Paul Newman had a vision: imagine if children living with serious illnesses had the chance to simply be children. To just have fun. So he started a camp where kids could, in his words, "raise a little hell." In 2012, The Association of Hole in the Wall Camps changed their name to SeriousFun Children's Network. The new identity embodies the root of their work—highlighting Paul Newman's belief that taking fun seriously can make a real difference in the lives of children who need it most. Today, Paul's legacy of the SeriousFun Children's Network, is a growing global community of independently managed and financed camps and programs. Dedicated teams help children and their families reach beyond illness to discover joy, confidence and a new world of possibilities—always free of charge. – See more at: How the Fun Began with Paul Newman
  • Administration for Children & Families is a federal agency (U.S. Department of Health & Human Services) funding state, territory, local, and tribal organizations to provide family assistance (welfare), child support, child care, Head Start, child welfare, and other programs relating to children and families.
  • AbleNet products and solutions for teaching children with disabilities
  • Henry B. Betts LIFE Center is a multimedia education center that provides opportunities for Learning, Innovation, Family and Empowerment for people living with a wide range of cognitive and physical impairments, chronic conditions or diseases affecting function—i.e., Ability. [Illinois]
  • The Coordinating Center provides multiple services for individuals with complex medical needs and disabilities, their families and others who support them, as well as providers of services
  • University Center for Excellence in Developmental Disabilities (UCEDD), Education, Research, and Service at the University of Southern California Childrens Hospital Los Angeles (USC UCEDD at CHLA) is a nationally recognized leader in developing and supporting quality services and systems for individuals with, or at risk for, behavioral, developmental and or special health care needs and their families. They have three centers: Center for Disability Studies and Community Inclusion, Center for Child/Family/Health Initiatives and Leadership Development (CHILD), and the Center for Community Mental Health (CMH).
  • Check & Connect: A Model to Engage Students in School and Prevent Dropout provides information about current field studies to reduce dropout rates and increase school completion for youth with and without disabilities in grades K-12 in urban and suburban communities
  • Children with Special Needs
  • Congenital Heart Defects in Children Fact Sheet
  • Mentorship for Youth with Disabilities an electronic mentoring program designed to promote successful transition of youth with disabilities to adult life is beneficial.
  • (CTY) The Johns Hopkins Center for Talented Youth The Johns Hopkins University Center for Talented Youth identifies and develops the talents of the most advanced K-12 learners worldwide. As part of Johns Hopkins University, CTY helps fulfill the university's mission of preparing students to make significant future contributions to our world. Today, CTY is the Center where young talent thrives. A former CTY student started Facebook. Another co-founded Google. CTY supports and encourages academic talent and achievement; to help in locating and nurturing talent from all neighborhoods and nations; and to engage in, and communicate, meaningful research to advance the understanding of teaching the world's most capable young people. An academic center at Johns Hopkins University, CTY is a 501 (c)(3) nonprofit. [Baltimore, Maryland]
    • CTYOnline CTYOnline connects gifted students to challenging courses, engaging faculty, and other gifted students around the world. Each year, thousands of students in Pre-K to 12, from more than 60 countries, enroll in CTYOnline, CTY's unique distance learning program that offers challenging courses throughout the year. Students can work from home or school at times convenient for them, and many earn credit or placement for their CTYOnline courses.
  • Diakon Adoption & Foster Care Services
  • Enabling Devices products, services, and resources
  • Euro-Pēds National Center for Intensive Physical Therapy for children and young adults with cerebral palsy and other neuromuscular disorders
  • Exceptional Children's Assistance Center a North Carolina parent's center
  • Family friendly fun ideas and family health resources to enhance the quality and enjoyment of family life for families with disabilities
  • Family League of Baltimore City Inc. [Maryland]
  • Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. We are committed to listening to and learning from families, and encouraging full participation in community life by all people, especially those with disabilities.
  • Federation of Families for Children's Mental Health is a national family-run organization linking more than 120 chapters and state organizations focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families. It was conceived in Arlington, Virginia in February, 1989 by a group of 18 people determined to make a difference in the way the system works. The National Federation works to develop and implement policies, legislation, funding mechanisms, and service systems that utilize the strengths of families. Its emphasis on advocacy offers families a voice in the formation of national policy, services and supports for children with mental health needs and their families.
  • Hearts Unite the Globe provides a series of podcasts to empower, educate, and enrich the lives of members of the congenital heart defect (chd) and bereaved communities.
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  • Maryland Programs for Infants, Toddlers, and Preschoolers with Disabilities. [Maryland]
  • Maryland Relay program "Keeping in Touch" a telecommunications service helping people who are deaf, hard of hearing, deafblind, or speech disabled to easily communicate through TTY (text telephone) with anyone using a standard phone. [Maryland]
  • Virginia Relay, enables people who are deaf, hard of hearing, DeafBlind, or speech disabled to communicate by TTY (text telephone) or another assistive telephone device with anyone who uses a standard phone. [Virginia]
  • Maryland Family Net ensures that young children and their families have the resources to learn and succeed. [Maryland]
  • Mothers with Attitude, "Humor and help for adoptive moms, special-needs moms, any old moms at all."
  • Ohio Developmental Disabilities Council for children and families. [Ohio]
  • Parents Helping Parents (PHP) PHP helps families who have children of any age with special needs. PHP's family resource and service staff field calls from families having children from infancy through their child's adulthood into their 50s and 60s! It is never too late to call PHP! Adult siblings who have responsibility for the care of their sibling with a disability call PHP too.
  • Widgit, software for special needs, including symbols for literacy