WHAT'S NEW ON THIS SITE
| 13-03-2023 Dr Kate Attfield is a lecturer in Health and Social Care, at the Cardiff School of Education and Social Policy, Cardiff Metropolitan University. She has [recently] published sociology of education research on girls with Triple X. Kate attained her PhD at Cardiff University. |
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| Triple X superwomen: their post-compulsory education and employability Received 02 Feb 2020, Accepted 11 Dec 2020, Published online: 25 Jan 2021 ‘You don’t know how big this heart is’: parental accounts of Triple X super-daughters’ life course and emerging community citizenship Received 21 Aug 2022, Accepted 13 Feb 2023, Published online: 25 Feb 2023 |
| 20-01-2023 "Triple X syndrome: Psychiatric disorders and impaired social functioning as a risk factor" Published online by Cambridge University Press: 21 December 2022 Maarten Otter, Bea C. M. Campforts, Constance T. R. M. Stumpel, Thérèse A. M. J. van Amelsvoort en Marjan Drukker Click on this link to read the article |
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*** Contactgroep Triple X Syndroom wishes everyone a MERRY X-Mas and a HAPPY New Year. *** |
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| 19-12-2022 "Early impact of X- and Y-chromosome variations (XXX, XXY, XYY) on social communication and social emotional development in 1–2-year-old children". Bouw N, Swaab H, Tartaglia N, Jansen AC, van Rijn S. Am J Med Genet A. 2022 Juli. |
| 26-09-2022 AXYS Newsletter with the article "The comorbidity landscape of 47,XXX syndrome: A nationwide epidemiologic study" Agnethe Berglund, Kirstine Stochholm, Claus Gravholt. Genetics in Medicine 2022. |
| 26-09-2022 Jessica Langenhoff is a Dutch woman with mozaic Triple X Syndrome and attended the XY Workshop at the Worldwide XY event in Leiden, The Netherlands which was held in september, 12-14. She wrote a short impression of this workshop: |
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| 21-08-2022 AXYS Paper of the month; "Emotional reactivity and expressivity in young children with sex chromosome trisomies: evidence from psychophysiological and observational data" Kimberly C. Kuiper ORCID Icon,Hanna Swaab,Nicole Tartaglia,Lisa Cordeiro &Sophie van Rijn Received 13 Apr 2022, Accepted 11 Jul 2022, Published online: 25 Jul 2022 AXYS Newsletter with a summary of this article by Jessica Langenhoff. |
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| 16-06-2022 Second article related to the Dutch studie 2015-2018 Adults with Triple X Syndrome. Maarten Otter, Bea C. M. Campforts, Constance T. R. M. Stumpel, Thérèse A. M. J. van Amelsvoort, Claudia Vingerhoets en Marjan Drukker. This prelink (june 9, 2022) is available: "Neuropsychological Findings in Adults with Triple X Syndrome" |
| 31-01-2022 We sadly have to announce that they decided, due to the Covid-Omicron pandemic in the Netherlands, to postpone the workshop to September 12-14 (2022). |
| 29-11-2021 International Workshop on Klinefelter Syndrome, Trisomy X, and XYY’ March 23-25, 2022 Leiden. The Netherlands. |
| 19-10-2021 New article by N Bouw, H Swaab, N Tartaglia, S van Rijn. Published June 9, 2021 Archives of Clinical Neuropsychology The Impact of Sex Chromosome Trisomies (XXX, XXY, XYY) on Early Social Cognition: Social Orienting, Joint Attention, and Theory of Mind |
| 19-10-2021 Triple X Syndrome Support is a new innovative idea that is piloted in Birmingham, UK is inspired to supporting people affected by Triple X Syndrome. They are a small team of volunteers who are passionate about Triple X from a UK social perspective. Research is at the heart of everything they do. They collaborate with leading organisations. More information and also a TRIPLE X MENTAL HEALTH PROFESSIONALS LEAFLET on triplexsyndromesupport.co.uk |
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| 7-10-2021 Featured Research Paper of the Month AXYS would like to share this article authored by board member Erin Torres, MSN, PMHNP-BC, RN-BC. Despite progress made in recent years, this article highlights the necessity of educating health care providers about X&Y chromosome variations. |
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| 03-03-2021 9 April 2020 Am J Med Genet Part C. 2020;184C:444–455 Urbanus E, Swaab H, Tartaglia N,Cordeiro L, S van Rijn: The behavioral profile of children aged 1–5 years with sexchromosome trisomy (47,XXX, 47,XXY, 47,XYY) |
| 03-03-2021 2021 AXYS Virtual Family Conference More info at https://genetic.org/2021 |
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| 01-03-2021 Learning Disability Today Kerry Ann Blog, 09 May 2019 Kerry Ann has Trisomy X chromosome syndrome. Here, she tells Learning Disability Today about both her achievements - and the difficulties she faces - in order to raise awareness of this "forgotten" syndrome. |
| 01-03-2021 Article Feb 2021 Published online by Cambridge University Press: Results Dutch studie Adults with Triple-X Syndrome 2015-2018 |
| 19-05-2020 Diana (1969), a Dutch woman who has Triple X Syndrome, writes about her experiences in life. She recently published 2 new books in English. "Step forward with an extra X". (children) "Find your way with an extra X" Diana has her own website also in English. On this site you can find the link how to order these books and how to get in contact with her. |
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Changes in the cohort composition of Turner syndrome and severe non-diagnosis of Klinefelter, 47,XXX and 47,XYY syndrome: a nationwide cohort study. The Danish Cytogenetic Central Registry (DCCR) holds information on all karyotypes performed in Denmark since 1961. They identified all individuals in the DCCR with a relevant SCA during 1961–2014. Orphanet Journal of Rare Diseases Januari 2019 |
| 16-12-2019 Dr Kate Attfield is doing an academic research project on the effects of having an extra X chromosome (Trisomy X). She would like to interview parents of child or adult daughters, or adults themselves, across England and Wales. |
| 16-12-2019 AXYS Newsletter Summer 2019 |
| 16-12-2019 Featured Research Papers by Month: AXYS |
| 16-12-2019 Oxford University research about communication and Triple X They are looking to involve children aged 7 to 14 with an extra X or Y chromosome (based in the UK or overseas). |
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| 23-12-2018 Behavioral and psychological features in girls and women with triple-X syndrome. Am J Med Genet A. 2018 Nov;176(11):2284-2291 |
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"Find your way" Practical handbook now available!! Diana, a Dutch female (1969) with Triple X Syndrome has written several books about her life with an extra x. This English translation is a practical handbook and is dedicated to adults who want to learn (even more) about dealing with several sensitivities and vulnerabilities, like symptoms of Trisomy X syndrome. More info and how to order this book: |
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| More books by Diana and other writers can be found at: |
16-07-2016 AXYS Spring 2016 Newsletter For more news, upcoming events and information visit the AXYS website at www.genetic.org |
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16-07-2016 Upcoming Study Leiden University, The Netherlands. This longitudinal study is focused on neurodevelopmental problems in young children with XXY, XXX and XYY, aged 1 to 6 years. Research and clinical care are integrated within the new Dutch TRIXY (TRIsomy of the X and Y chromosomes) Expert Center. |
25-05-2016 A new update on the story of Lizzy was written in May 2016. Lizzy is 18 now. She attends intermediate vocational education now, specialising in photography |
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11-03-2016 Nemours eXtraordinarY Kids Clinic at Alfred I. duPont Hospital for Children in Wilmington, DE |
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23-12-2015 New British article published: "Children with sex chromosome trisomies: parental disclosure of genetic status". |
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23-12-2015 Contactgroep Triple-X Syndroom wishes you 365 warm and bright days, a new year full of health and happiness. We're gratefully looking back on the past year filled with new developments and knowledge, several meetings and valuable contacts. |
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14-10-2015 Video's Leiden University at the Frambu Conference in Norway, April 15, 2015: |
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| Developmental risks in children with an extra X chromosome: practical and clinical implications The cognitive and behavioral profile of 47,XXX (Trisomy X): A research approach www.frambu.no |
14-10-2015 The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy |
25-09-2015 NEW RESEARCH - Call for Volunteers Geisinger’s MAP study 2015: Sex Chromosome Disorders |
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| They are interested in understanding the extent to which family background influences learning and behavioral symptoms in individuals with Turner syndrome, Klinefelter syndrome, and Trisomy X. More information on the link below; |
14-08-2015 New Dutch study: Adult Triple X Women New Dutch study by 2 psychiatrists: recruting adult (18 years and older) women with and without Triple X syndrome to compare their functionality in life. This research contains a bloodtest, a brain scan and psychiatric/psychological evaluation. |
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11-08-2015 Update on the story of Cathy Cathy is now 17 years old. She's on a mission to increase Trisomy X Awareness as part of her Girl Scout Gold award. She is trying to tell 1 million people about Trisomy X. She is about 1/4 of the way there! She would appreciate any and all help by visiting and/or sharing the link to her website She even created an awareness video that you can find there. It's a great glimpse into her strengths and struggles. |
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19-05-2015 Register now for the 2015 AXYS Focus on Empowerment Families' Conference for X&Y Chromosome variations. • This conference is being conducted in partnership with the XXYY Project, which is now a project of AXYS. • Dates: July 24 to 26, 2015 • Location: Baltimore, MD • Partial List of Presenters |
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19-06-2015 Conference X and Y chromsome variations "Diagnosis and treatment of developmental problems". Guestspeaker: Nicole Tartaglia, MD from the Extraordinary Kids Clinic in Denver. Vrijdag 18 september 2015 9.30-17.00 uur NBC Congrescentrum Nieuwegein The Netherlands |
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| More information in English is available, please download the Pdf at the following link: www.to-mpower.nl |
29-05-2015 New articles published "A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders" Journal of Intellectual Disability Research Volume 59 part 5 pp 474–486 may 2015 |
| "Increased prevalence of sex chromosome aneuploidies in specific language impairment and dyslexia" Developmental Medicine & Child Neurology Accepted for publication 9th August 2013. Published online |
28-04-2015 Support Group for XXY and other X and Y Chromosome Variations This is for all families in Southern California - Los Angeles and Orange County. They will be having a Potluck BBQ Picnic at Griffith Park, next to the Golf Course. PLEASE SAVE THE DATE Saturday, May 30th at 1:00 p.m. |
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04-03-2015 Diana, a Dutch woman , has written several books about her life with Triple X Syndrome. Her latest book is the English translation of the 5th edition of her Dutch book, now called "My Extra X". This book describes the constant perseverance and optimism as well as the strength that the author is able to obtain from humour, spirituality and being open to positive changes. This book is available at www.boekenbestellen.nl In Pdf/E-book: www.boekenbestellen.nl/PDF |
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| You can also order this or any other book by sending Diana an email |
17-12-2014 Merry X mas and a Happy New Year Thank you for all efforts and input towards our worldwide website.We hope to connect in 2015. Thea and Ida |
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30-10-2014 AXYS Support Group for XXY, XYY, and XXX New York/New Jersey/Connecticut Area Sunday november 9, 2014 St. Charles Hospital, New York |
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30-10-2014 "Things that make me special: A picturebook for girls with Trisomy X". |
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| "Information for parents who are considering whether to talk about an extra X chromosome with their daughter and family members" |  |
17-09-2014 Diana, a Dutch woman who has Triple X Syndrome, has written several books about her own experiences. Some books are translated in English. Her latest book, especially written for children, is called "Step forward". All books are for sale. More info at Diana's website or at www.boekenbestellen.nl |
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15-09-2014 2015 Norway April 27-29: "Triple X of all ages" Course for children, youth and adults with the diagnosis and their families and service providers. Parents and professionals may attend all or part of the course. |
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| Through lectures, group discussions and other activities, they will focus on medical diagnosis information, upbringing and schooling, education as well as self and everyday challenges. More info at this link (translated in English): www.frambu.no |
09-09-2014 Study Denmark 2013-2015 The Aarhus University Hospital is looking for Danish women with Triple X Syndrome above 18 years old to participate in a study about the relationship between having extra chromosome(s) and diseases. More information on the Danish website or send an email to christian.trolle@kl.au.dk |
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09-09-2014 New brochures by AXYS about several sex chromosome aneuploidies: Triple X Syndrome |
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14-07-2014 "Social cognition and underlying cognitive mechanisms in children with an extra X chromosome: a comparison with autism spectrum disorder". S. van Rijn, L. Stockmann, G. van Buggenhout, C. van Ravenswaaij and H. Swaab Genes, Brain and Behavior Volume 13, Issue 5, pages 459–467, June 2014 |
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14-07-2014 Clinical research: Extra X impairs awareness of others' minds Kate Yandell, Simons Foundation Autism Research Initiative. June 2014 |
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28-05-2014 NEXT CONFERENCE - SAVE THE DATES: July 24, 25 and 26, 2015 At Johns Hopkins in Baltimore, MD. The conference will feature ALL X and Y chromosome variations. |
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28-05-2014 AXYS is a merger between KS&A and AAKSIS. They will provide training about X and Y chromosome variations at the next National Society of Genetic Counselors conference this fall. Dr. Tartaglia and several other professionals will conduct a special 90 minute educational breakout session titled : |
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| "Sex Chromosome Aneuploidies: A Multidisciplinary Perspective on Counseling and Current Treatment Recommendations." |
26-04-2014 Elizabeth and her Extra X Authored by Arlie Colvin Elizabeth and her Extra X is a children's book for kids with Triple X or Trisomy X syndrome (47, XXX). This book helps children and adolescents with Triple X understand their condition. |
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| The story follows Elizabeth, a young girl with Triple X, through her busy day as she attends school, goes to golf practice and has a doctor's appointment. The story explores the genetics of Triple X and addresses social, academic and medical aspects of this condition in an age-appropriate, fun way. Though Elizabeth's condition presents her with many challenges throughout the story, she is able to work through each challenge in her own way. Girls with Triple X will identify with and learn from Elizabeth as they read this book. www.createspace.com |
23-4-2014 KS&A is changing its name to AXYS. (KS&A / AAKSIS) AXYS is the nation's oldest and largest non-profit organization addressing the needs of the approximately 1 out of 500 individuals who were born with one or more extra X and/or Y chromosomes, as well as their families and the clinicians, educators and research scientists serving them. |
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| The merger and transition to the name AXYS is just underway and ongoing. Many places on the website will still reference KS&A. |
11-04-2014 Triple X Research Study, University of Oxford, UK, 2014 Children with language, reading and communication problems. The research group at the University of Oxford is conducting a study looking at children with a sex chromosome trisomy. |
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| They are currently looking for children aged 5-16 years old who have Triple X Syndrome to take part in their research. |
10-04-2014 Spanish translation of Ginnie Cover's "Living with X and Y chromosome anomalies" now available at www.genetic.org |
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10-03-2014 German article published: (Abstract in English available) |
20-01-2014 The eXceptional Kids Clinic at EmorY Serving All X and Y Chromosome Variations |
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| The eXceptional Kids Clinic at EmorY is a unique interdisciplinary clinic at Emory University that addresses the medical, developmental, and psychological needs of children and adolescents with X & Y chromosome variations. This includes XXY/Klinefelter syndrome, XYY, Trisomy X, XXYY, and all other sex chromosome variations. |
14-01-2014 Personal story of Erica, born in july 2012 She lives in Belgium. Her mother wrote her story in Dutch. |
20-12-2013 Contactgroep Triple-X Syndroom wishes everyone a warm and wonderfull Christmas and a happy New Year. Thank you for all efforts and input towards us and our worldwide website. Thea and Ida |
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18-11-2013 Families wanted for Parenting Special Needs Magazine They are looking for four families willing to have their children's stories spotlighted in the magazine in articles of approximately 1000 words. These profiles will not be anonymous; your child's name and any photos that you provide will be published, if selected, but your place of residence will NOT be disclosed in the article. If you are willing to lend your family's experience to an educational article in this magazine, please send an email to Ms. Cover (Ginnie) at ginniecover@gmail.com. |
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06-10-2013 Triple-X Meeting The Netherlands Saturday March 29, 2014 11.00 h - 17.00 h Leids Universitair Medisch Centrum Leiden, The Netherlands |
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06-10-2013 New York/New Jersey/Connecticut Area Support Group for XXY, XYY, and XXX Sunday, October 27, 2013 |
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| This support group will meet from 12:30 to 4:30 at the William Paterson University Student Center/University Commons Room 211. The University is located at 300 Pompton Road, Wayne, NJ 07470. If you will be attending, please contact Uldis Silgailis at ugailis1@warwick.net |
30-09-2013 XXX Study in Germany about Health and Developmental problems. More info in German at www.triplo-x.de Click on 'Aktuelles'. |
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30-09-2013 French translation of the personal story of Katie, born in 1968. |
18-09-2013 Brain Development and Learning Difficulties in Klinefelter Syndrome and Trisomy X/Triple X Syndrome |
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12-09-2013 French translation of the personal story of Alexandra, the mother of Céline Céline was born in 2009. She lives in the Middle East. |
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11-09-2013 Personal story of Julie Julie is 10 years old and lives in France. Her mother Alison wrote this French story. |
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09-09-2013 Dr. Sophie van Rijn of Leiden University (The Netherlands) wins the Gratama Science Award 2013 for her study of the extra x effects on social development. Video in English: www.leidenuniv.nl |
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| The article as a result of her study: "The Social Behavioral Phenotype in Boys and Girls with an Extra X Chromosome (Klinefelter Syndrome and Trisomy X): A Comparison with Autism Spectrum Disorder" Sophie van Rijn • Lex Stockmann • Martine Borghgraef • Hilgo Bruining • Conny van Ravenswaaij-Arts • Lutgarde Govaerts • Kerstin Hansson • Hanna Swaab Springer Science+Business Media New York 2013 |
19-06-2013 Diana, born in 1969, wrote an update about her personal life in Dutch. She also published her new book "Houd moed". The English version of this book will be named "Find your way". We'll make an announcement when this translation is for sale. |
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14-06-2013 The mother of Cathy wrote an update of her 15 year old daughter who has Triple X syndrome. Cathy lives in California, USA She just finished her freshman year in high school. |
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23-05-2013 UK based parents needed The Unique Chromosome Support Group is working on a project involving XXX girls with Dorothy Bishop from the University of Oxford. One of the things that they have put together is a booklet for parents to use when they tell their daughter that she has an extra X chromosome. |
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| They would very much like to trial this booklet with some families who haven’t yet told their daughter but would like to and would be interested in using this booklet to help them. If you have not yet told your daughter and might be interested, please contact sarah@rarechromo.org who will be able send you a copy. |
| They are just looking at UK families at the moment. Many thanks. Helen Clements, Triple X Support Group UK |
02-05-2013 KS&A is pleased to announce that May is "National X & Y Chromosome Variation Awareness Month!" More info at www.genetic.org |
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15-04-2013 New study by UCLA and KS&A: |
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05-04-2013 The story of Leah, born in 2006 in the UK. |
05-04-2013 Poor socio-economic status in 47,XXX - an unexpected effect of an extra X Kirstine Stochholm, Svend Juul, Claus H. Gravholt European Journal of Medical Genetics (20 March 2013) |
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21-03-2012 2013 "Looking to the Future for X and Y Chromosome Variations" Families Conference by KS&A and AAKSIS Children's Hospital in Denver, Colorado July 26-28 Everything you need to know is here: www.genetic.org |
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17-03-2013 Diana, a Dutch woman (1969) with Triple X Syndrome, wrote her personal story and published this in a book. She rewrote the script so it's now more suitable for children/teenagers to read it. It recently was translated into English. More information at Diana's website www.dianadivera.net |
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02-02-2013 Update Ioli in Dutch, born in 2003. She lives in Greece. Her mother is Dutch. |
12-01-2013 MULTIDISCIPLINARY CLINIC FOR X AND Y CHROMOSOME VARIATIONS: www.childrenscolorado.org |
18-12-2012 We're gratefully looking back on the past year filled with knowledge, new meetings and valuable contacts. Thea and Ida |
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26-11-2012 Discussing Diagnosis with your Child X and Y Chromosome Variation Study An important study being conducted by a graduate student working in conjunction with the eXtraordinarY Kids Clinic at Children's Hospital Colorado in Denver. |
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05-11-2012 The 7th Meetingday in France for families of members with a (sex) chromosome anomaly was held in october. There were 19 families present. None of them on behalf of Triple X Syndrome. |
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05-11-2012 2013 Mile High Families' Conference for X and Y Chromosome Variations July 26, 27 and 28 EXtraordinarY Kids Clinic at Children’s Hospital Denver. More info at www.genetic.org |
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10-10-2012 New informational and educational brochure by KS&A. This is intended for professionals and newly diagnosed individuals who are eager to learn about this condition. |
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08-10-2012 Psychology- Genetic Disorders Published Nov 2011 Contains articles from Wikia about all kinds of diseases and syndromes, also Triple X Syndrome. Click on this link to order this book |
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05-10-2012 Family Meetingday The Netherlands, 01-09-2012 There were 14 'families' present, 10 Triple X daughters and 1 adult woman. More info in the Dutch report of this event: |
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05-10-2012 Nienke's parents wrote an update of their daughters personal story in Dutch. Nienke is 8 years old. |
05-10-2012 Freya (1998) has Triple-X Syndrome and wrote a short story in Dutch herself about what kind of work she wants to do if she's grown up. |
16-09-2012 EXCLUSIVE FACEBOOK SUPPORT GROUP: For girls and women with Trisomy X Only! Trisomy X- A Group Just For Us www.facebook.com This is a closed group and membership is strictly limited. Click the link and submit your request to join. |
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11-09-2012 Sex Chromosome Trisomy Study Children with language, reading and communication problems A study of children aged 5 - 16 years. Oxford Study of Children's Communication Impairments, UK More info at oscci.psy.ox.ac.uk |
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11-09-2012 New York /Tri-State Regional Support Group X and Y Chromosome Variations 1 to 5 pm (registration 12:30-1:00) Sunday, October 14, 2012 Long Island Room, Winnick Student Center Long Island University (CW Post Campus) 720 Northern Blvd., Brookville NY 11548 |
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| Counseling students planning to do research in X and Y chromosome variations will speak with attendees regarding their interests and potential projects. More info at hughes0022@yahoo.com |
24-08-2012 Springer Publishing Company, LLC 2010 Chapter 65, page 11: Rebecca Wilson Elizabeth Bennett Susan E. Howell Nicole Tartaglia |
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7-08-2012 Ida, mother of Freya (1998), wrote an update in Dutch of her daughters personal story. |
1-08-2012 NEW: FAQ for Trisomy X (47,XXX) www.genetic.org |
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31-07-2012 "Attention-Deficit Hyperactivity Disorder Symptoms in Children and Adolescents with Sex Chromosome Aneuploidy: XXY, XXX, XYY, and XXYY" Nicole R. Tartaglia, MD,* Natalie Ayari, BA,* Christa Hutaff-Lee, PhD,* and Richard Boada, PhD J Dev Behav Pediatr. 2012 May 9. |
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23-07-2012 The Dutch psychiatrist Maarten Otter wrote his second article regarding Triple X Syndrome. Before you read the article it's important to read his introduction. Maarten Otter will also be present on our 5th Family Meetingday in september. |
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11-07-2012 5th Support Group Family Meeting, The Netherlands Saturday, Sept 1, 2012 11.00 h - 17.00 h Conferentieoord Deel 4 Zwartsluis |
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11-07-2012 The mother of Maria (1995), a Dutch teenager with Triple X Syndrome, wrote an update of her personal story in Dutch. |
11-07-2012 Diana (1969), a Dutch woman with Triple X Syndrome, has her own website. Some parts are written in English. www.dianadivera.net |
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19-05-2012 Follow up Research Project 2012 Susan Howell, Genetic Counselor who works with Dr. Nicole Tartaglia at the eXtraordinarY Kids Clinic in Denver, CO does a follow up study to Kali Messer's research survey. More details at: |
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29-03-2012 Announcing the latest issue of KS&A's Newsletter, "The Even Exchange". www.genetic.org |
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22-03-2012 New York /Tri-State Regional Support Group X and Y Chromosome Variations (XXY, XYY, XXX, XXYY, XXXXY, XXXX, XXXY, XXXXX) 1 to 5 pm (registration 12:30-1:00) Sunday, March 25, 2012 Cohen Children's Medical Ctr. (Long Island Jewish Hospital) 269-01 76th Avenue, New Hyde Park, NY 11040 |
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06-03-2012 Triple-X Guide Unique in Spanish |
28-02-2012 Trisomy X Capstone Research Project This is an important study being conducted by a graduate student working in conjunction with the eXtraordinarY Kids Clinic at Children's Hospital in Denver. IMPORTANT NEW TRISOMY X STUDY Please Participate |
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14-02-2012 The Atypical Learner Conference April 13-15, 2012 Annapolis, MD For children with X & Y Chromosome Variations Dyslexia and Dyspraxia. More info at www.thefocusfoundation.org |
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14-02-2012 Personal story Sofia, 11 years old. Her mother Anneli from Denmark wrote this story in English. She and her husband are the founders of the Danish Triple X website and Supportgroup www.triple-x.dk |
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10-02-2012 Unique’s 13th Family Conference Weekend Friday April 20th – Sunday April 22nd 2012 The Barcelo Daventry Hotel Sedgemoor Way, Daventry, Northamptonshire, NN11 0SG England More info at www.rarechromo.org |
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10-02-2012 "What is Triple X Syndrome?" in Finnish. |
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07-02-2012 5th Triple-X Meeting/Supportday The Netherlands Saturday Sept 1, 2012 Conferentieoord Deel Vier www.deelvier.nl |
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31-01-2012 New York /Tri-State Regional Support Group X and Y Chromosome Variations (XXY, XYY, XXX, XXYY, XXXXY, XXXX, XXXY, XXXXX) Date: Sunday, March 25, 2012 Time: 1 to 5 pm (registration 12:30-1:00) Location:Cohen Children's Medical Ctr. (Long Island Jewish Hospital) 269-01 76th Avenue, New Hyde Park, NY 11040 |
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| Presentation: Results from the 2011 Survey of Persons with X and Y Chromosome Variations Support groups will also be seated by table for discussion as part of the meeting following the presentation. Please confirm attendance by e-mail, including your name, number attending, relationship to the person with X/Y variation, and genetic signature to: hughes0022@yahoo.com. |
22-01-2012 7th Support Meeting Rare Chromosome Anomalies France Saturday, May 19, 2012 8.30h - 18.30h Room Victor Jara, Maison de la Challe, à Éragny sur Oise, France. For cariers, familymembers, friends and healthcare professionals. |
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22-12-2011 Contactgroep Triple-X Syndroom wishes everyone a warm Christmas and a New Year filled with love, health and happiness. |
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06-12-2011 Living with Klinefelter Syndrome (47,XXY) Trisomy X (47,XXX) and 47,XYY: A Guide for Families and Individuals Affected by Extra X and Y Chromosomes. Released in November, 2011. Written by one of KS&A’s long-time members, Virginia Isaacs Cover. Click for more details |
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06-12-2011 Sensory Smart Store Many children are extra-sensitive to the texture and feel of clothing. This is also often an issue with Triple X girls. Webshop with clothing solutions for sensory-sensitive kids. sensorysmart.co.uk |
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30-11-2011 Triple X Support all over the world: |
29-11-2011 "Triple‐X and passivity — barriers to learning" Australian Journal of Learning Disabilities Online paper 2009 This paper presents a single case study involving a seventeen‐year‐old girl with Triple‐X. It describes and explains a ’later’ intervention program based on sight recognition of common words, use of controlled text, short‐term auditory memory training, and development of semantic skills and working memory. The program proved successful in improving reading, short‐term memory, and spoken language skills. More infornation: www.tandfonline.com |
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27-11-2011 "Sex chromosome trisomies in Europe: prevalence, prenatal detection and outcome of pregnancy" |
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| Boyd PA, Loane M, Garne E, Khoshnood B, Dolk H; EUROCAT working group. University of Oxford. Eur J Hum Genet. 2011 Feb;19(2):231-4. Epub 2010 Aug 25. www.ncbi.nlm.nih.gov |
11-11-2011 French Forum Triple X Syndrome forum.aufeminin.com |
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18-10-2011 The Neurodevelopmental Study by the University of Leiden (The Netherlands) has been extended with a MRI of the brain. Participants from Belgium are seen in Leuven. In 2012 all results will be calculated and analysed and hopefully presented in the final report in Spring 2013. |
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18-10-2011 Familyday France Sept 24, 2011 It was a meeting for persons with a chromosome anomaly and their families. There were 17 families present. None of them on behalf of Triple X Syndrome. |
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18-10-2011 Newsletter KS&A Fall 2011 The newsletter has personal stories, information about support groups, news about a new guidebook on X and Y chromosome variations, an introduction to their library and much more. www.genetic.org |
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18-10-2011 Facebook/Skype Trisomy X chat session. They had a fabulous turn out for the first Facebook Trisomy X chat! Next time they are going to experiment with a Skype chat. Skype is an online calling service. Webcams are not required, but you do need to download Skype and let them know to look for you on the date of the call! |
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| More info (membership required) at www.facebook.com/groups/TrisomyX |
13-10-2011 Andrea, a 23 year old female with XXX, wrote her personal story. She was diagnosed at the age of 15. Andrea lives nearby Boston. |
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04-10-2011 Summary “Taking it to the Ma xXX” 2nd Massachusetts Area Trisomy X Support Group Meeting Sunday October 2nd 2011 |
28-09-2011 "A Review of Trisomy X (47, XXX)" in Spanish: www.genetic.org |
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27-09-2011 A closed discussion forum for people with or people who have daughters with Trisomy X. trisomyx.proboards.com |
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20-09-2011 Personal story of Sophie published in Dutch and in German. Sophie is 9 years old and lives in Germany. Her mother is Dutch. |
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20-09-2011 Danish Triple X website 'on air' Contactgroup Triple X did a wonderful job by creating this beautiful and very informative website. Congratulations from Holland. Keep up the good work! |
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03-09-2011 “Taking it to the Ma xXX” 2nd Massachusetts Area Trisomy X Support Group Meeting Sunday October 2nd 2011 Baystate Medical Center 361 Whitney Avenue Holyoke, MA |
| If you are interested in joining and want to be added to the email list please contact Joanne Burke |
28-08-2011 Triple X Syndrome Support Australia Contact: The Association of Genetic Support of Australasia 66 Albion St Surry Hills NSW 2011 Ph: 02 9211 1462 Email: info@agsa-geneticsupport.org.au Website: www.agsa-geneticsupport.org.au |
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01-08-2011 Neurodevelomental Diagnostic Center for Young Children Led by Dr. Carole Samango-Sprouse, a world-renowned specialist in neurogenetic and developmental disorders. |
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| The Neurodevelopmental Diagnostic Center for Young Children conducts neurodevelopmental assessments of boys and girls (ages infancy through adolescence) who have learning difficulties and neurodevelopmental disorders. The Center specializes in identifying and advocating treatment protocols. More information at www.ndcforyoungchildren.com |
28-07-2011 6th Familyday France Sept. 24, 2011 l'Espace des Calandres à Éragny sur Oise (95) For persons with a chromosome anomaly and their families. |
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28-07-2011 Danish translations published: |
11-07-2011 Oxford U.K. Study Day On Sept. 30 in 2007 a Study Day was held in Oxford for Triple X women and their parents. |
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| Several guestspeakers along with 20 families took part this day. In 2008 we already published a report of this meeting which was written by a mother who attended this event. Hereby a link to the official report: |
01-07-2011 Harmonizing genetic testing across Europe. EuroGentest has developed a series of 15 leaflets to provide general information for patients and families about genetics and genetic testing. |
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| The leaflets can either be downloaded and printed out, or you can look at the information online by choosing the HTML version. You can select your language: www.eurogentest.org |
16-06-2011 Contactgroup Denmark did a wonderful job translating 2 leaflets and the resume of Kathleen Erskine in Danish. Thank you Erik and Anneli. Keep up the good work! |
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11-06-2011 Child Psychiatry Branch, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland, USA. 2009 |
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| "Effects of sex chromosome aneuploidies on brain development: evidence from neuroimaging studies". |
08-06-2011 Meetingday France On May 7, the 9th Familiyday was held in France for persons with a sex chromosome anomaly. There were 31 families present, one of them on behalf of Triple X Syndrome. The others were all participants for Klinefelter Syndrome. |
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06-06-2011 Cathy's mother wrote an update of her daughter who turned 13 today. Congratulations !!!!!!!!! |
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01-06-2011 1th Meeting Denmark 2011 On May 14 the first Danish Meetingday took place. There were 13 participants representing 7 families. A great start! The website of the Danish Contactgroup will be available soon. |
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03-06-2011 Due to the tornados that hit the Springfield area we need to reschedule our meeting. Thanks again to Baystate Genetics for offering to host the meeting for us in the fall hopefully! Thanks, Joanne Burke 27-05-2011 Massachusetts Area Trisomy X support group meeting on June 4th, 2011 Click on this link for details |
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26-05-2011 Trisomy X Syndrome and Social Security Disability www.socialsecurity-disability.org www.socialsecuritydisability.tv |
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12-05-2011 Short version of the 47, XXX article written by Maarten Otter, Dutch Psychiatrist, in 2009. Published by "The Society for the Study of Behavioural Phenotypes". |
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Triple-X foreningen i Danmark It's aim is to gather information about trisomy X (47, xxx), support to parents and to triple-x girls, and to promote interest in research in the area. For women with triple-x, parents of triple x girls and persons working with or interested in the triple-x syndrome. |
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| Founding meeting 14th. May 2011 13:00 to 15:00. The General Assembly held atHareskovens Lilleskole Skovbovænget 124, 2750 Ballerup. We hope to see many people there. Please mail your registration to mail@triple-x.dk To learn more about Triple-X syndrome, or join the association please contact us at: mail@triple-x.dk |
06-04-2011 KS&A is bringing vital education about X and Y chromosome variations straight to your desktop! What is the $47 Club? The $47 Club is a members-only 66% discount on a package of 6 webinars that focus on issues that are common to all X and Y Chromosome Variations. More info on www.genetic.org First Webinar is Scheduled for Wednesday Evening April 6. "Transitioning to Young Adulthood". |
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31-03-2011 New article 2010 Institute of Dentistry University of Oulu, Finland: "Root length in the permanent teeth of women with an additional X chromosome (47,XXX females)" |
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26-03-2011 The 2011 AAKSIS and KS&A Families' Conference for X and Y Chromosome Variations will be held in Denver, Colorado on July 29, 30 and 31, 2011. More info on Conference Location, Hotel Information and a partial List of Presenters |
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09-03-2011 Riet, the grandmother of Tessa-Jade, wrote an update about her granddaughter. Tessa-Jade turned 5 years old in january. |
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22-01-2011 More personal stories translated in spanish. |
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18-02-1011 9th Meeting XXY-XXX-X0-XYY France Saturday May 7, 2011 à Éragny sur Oise |
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| For persons with a sex chromosome anomaly and their families. www.valentin-apac.org |
18-02-2011 The First Annual Atypical Learner Conference For children with X & Y Chromosome Variations, dyslexia and dyspraxia Friday - Sunday April 8-10, 2011 Annapolis, MD ''Learning from the Past ~ Focusing on the Future'' More info on the link below: |
12-02-2011 New article in spanish Variabilidad fenotípica en pacientes 47, XXX. Presentación de cuatro casos nuevos Arch Argent Pediatr 2010;108(4):e88-e91/e88 Dr. Ernesto Goldschmidt, Dra. Marisa Márquez, Dra. Andrea Solari, Lic. María I. Ziembar y Lic. Alejandro Laudicina www.scielo.org.ar |
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12-02-2011 The story of Marian, born in 1957, has been translated from english into spanish. Marian lives in the Netherlands. Click on the link below to read Marian's story in spanish. |
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02-02-2011 Guide to Trisomy X Educational booklet for parents to give their daughter when they first tell her about Trisomy X. Available at www.genetic.org |
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05-01-2011 Family Conference Denver CO July 29-31, 2011 |
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28-12-2010 Personal story of Annette in Dutch. Annette has Triple X, is 44 years old and mother of 2 children. Her story is the 25th in the Dutch section. |
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17-12-2010 Contactgroep Triple X Syndroom wishes all her members, connections and website viewers a Merry Christmas and a Happy New Year Thea van de Velde and Ida Bakker |
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15-12-2010 Unlimited access to the online discussion groups (Forums). ONLY MEMBERS will be allowed to subscribe to KS&A’s discussion groups. Non-members’ subscriptions will lapse on December 15, 2010. Subscribe here |
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24-11-2010 Personal story of Emily in German. She was born on July 10, 2007 |
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03-11-2010 Guide for Families and Individuals Affected by Extra X and Y Chromosomes Ginnie Isaacs is mother of a young adult with Klinefelter Syndrome, as well as a social worker whose clients include adolescents and adults with a variety of developmental disabilities. |
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| She recently retired to continue in a small private practice, and to finish a project that she began last year of developing a lay-level guide for families affected by conditions involving extra X and Y chromosomes. The guide will also cover issues of interest to affected adults. Please help by participating in her Survey Nearly 400 individuals have completed her survey already! |
25-10-2010 ''Taking it to the Ma xXX" Massachusetts Area Trisomy X There were 24 families in this area interested. 14 families attended and 11 girls with Trisomy X. It was great to meet each other, share stories & socialize. For those of you that are intersted in being on the distribution list for this group please contact Joanne Burke |
13-10-2010 Anneli Frandsen from Denmark has a lovely 10 years old daughter with Triple-x. She would love to start a contact group in Denmark and therefore would like to get in contact with other danish triple-x families. Interested? Please send an email to: anneli@proator.com She's looking forward to hearing from you. |
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12-10-2010 ''Taking it to the Ma xXX" Massachusetts Area Trisomy X support group Saturday October 16, 2010 11:00 am - 3:00 pm Location: Wayland, Mass 14 families registered so far. Not to late to register, please contact Joanne Burke |
11-10-2010 Meeting of the Sacramento Area Trisomy X Support Group: Date: October 28, 2010 Time: 6:30 to 8:00 PM Location: U.C. Davis M.I.N.D. Institute Upstairs Boardroom Guest Speaker: Tarin Varughese, licensed speech-language pathologist Help with Anxiety Strategies for Children and Families All details: www.genetic.org |
22-09-2010 XXX Meeting The Netherlands October 2, 2010 22 families will participate this day. Among them 4 adults and 14 girls with Triple X syndrome. Three families are from Belgium. |
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16-09-2010 The second support group meeting for Trisomy X will be held in Wayland, Massachusetts, on October 16. Once again, Lennie Wilson, MSN, APRN, CNS-BC will be a presenter. Complete Details are here |
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16-09-2010 New Italian article published May 5, 2010 Milan ''Triple X syndrome: characteristics of 42 Italian girls and parental emotional response to prenatal diagnosis'' |
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08-09-2010 There are EIGHT families registered for the Chicago Area Support Group meeting on Saturday, September 18, 2010. If you would like to join and have not yet registered, please do! |
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29-08-2010 Save the Dates !!! 2011 Conference in Partnership with the eXtraordinarY Kids Clinic at Children's Hospital in Denver, CO July 29 to 31, 2011 |
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25-08-2010 Kimberley Smith Daly, a mom of a daughter who has Trisomy X and a presenter at this year’s conference, has created an exciting new site, the Trisomy X Café! The Trisomy X Café offers apparel, gifts and accessories featuring your choice of empowering Trisomy X graphics. A portion of every sale benefits KS&A and its work on behalf of Trisomy X. Be sure to visit the Trisomy X Café today! |
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16-08-2010 Chicago Area Trisomy X Support Group Meeting on September 18th in Oak Park. There are 8 families registered to attend and Lennie Wilson and Dr. Tartaglia are both planning to attend and speak. Use this link if you want more information |
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14-08-2010 Report Conference Ohio by Kimberley Smith Daly; Kimberley is the mother of an almost 5 year old Trisomy X girl. She also is a Dance/Movement Therapist. |
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14-08-2010 5th Familyday France Saturday October 2, 2010 10.00h-17.00h l'Espace des Calandres à Éragny sur Oise For persons with a (sex)chromosome anomaly and their families and friends. More info in french |
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13-08-2010 Report Conference Ohio by Mina Avery; Mina is the mother of a 12 year old Trisomy X girl and wrote a summary of this latest Conference she visited. |
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13-08-2010 New articles published: - July 23, 2010 - February 16, 2010 |
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16-07-2010 Brain and Cognition Research Study Brain Development and Learning Difficulties in XXY/Klinefelter Syndrome and Trisomy X/Triple X |
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13-07-2010 Triple X Syndrome on You Tube !!! www.youtube.com There's also a song made by Padded Cell called Triple X Syndrome. |
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09-07-2010 Chicago Area Trisomy X Support Group Meeting - September 18, 2010 They are planning a support group meeting for the afternoon of September 18, 2010. They will kick off with a family picnic at 11:30 AM and have a presentation at 2 PM in Oak Park, Illinois. |
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| They are pleased and honored to have with them, Lennie L. Wilson. She is a registered professional nurse (Lewis University, Lockport, IL; Lehman College, Bronx, NY) The title of Lennie's presentation will be: Trisomy X: " the past, the present and the future ". Dr. Nicole Tartaglia is hoping to be with them on the 18th as well. Please let them know if you plan to attend by clicking this link |
09-07-2010 Family Support Meeting The Netherlands Oct 2, 2010 Naturalis Museum Leiden 10.00h - 17.00h |
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| Presentation by Prof. Dr. Hanna Swaab, Professor of Clinical Child and Adolescent Studies, neuropsychology of developmental disorders: "Factors at risk while growing up with Triple X Syndrome" |
20-06-2010 Chicago Area Trisomy X Support Group To meet women and families affected by Trisomy X for the purpose of discussing triumphs, concerns and other issues. This group is open to all ages. SAVE THE DATE: Meeting is scheduled for Saturday, September 18, 2010 – specific times and speakers will be announced at a later date – however, they are thinking about an afternoon program. Location: TBD Contact: If you would like to be placed on the email distribution for this group and the upcoming meeting, please contact Elizabeth Walker at ewalker@midwestautomaticdoor.com |
19-06-2010 2010 Families Conference Mason, Ohio A list of scheduled presenters is posted on KS&A’s website homepage. |
08-06-2010 Translation in spanish by Mrs. Sylvia Baker of "Review of Literature" by Maarten Otter, 2009. |
31-05-2010 New article USA published! A review of trisomy X (47,XXX) Orphanet Journal of Rare Diseases 11 May 2010 Nicole R. Tartaglia, Susan Howell, Ashley Sutherland, Rebecca Wilson, Lennie Wilson. Corresponding author: tartaglia.nicole@tchden.org |
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28-05-2010 2010 "Call of the Wild" Families' Conference on X and Y Chromosome Variations Conference Details and Registration Information |
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13-05-2010 New article UK published Jan 5, 2010 "Neurocognitive outcomes of individuals with a sex chromosome trisomy: XXX, XYY, or XXY: a systematic review" |
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14-04-2010 Help asked for newsletter U.K. For those who don't know her, Helen Clements runs a group from the UK;"the Triple X Support Group", the first group for this condition set up in 1997. |
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| She hasn't had many stories over the passed 12 months to publish the next edition of their newsletter. She now has one of two and would need a few more to make it more interesting. If you would like to send an article about Triple X and how the condition affects you or your daughters or just a little success notice about an achievement your daughter has had, or problems you are facing, please send it to helenclements@hotmail.com Many thanks for your support in this matter. |
18-03-2010 Joint Conference KS&A - AAKSIS July 30 to August 1 2010 The most likely venue is the Great Wolf Lodge, a family resort in Mason, Ohio Click on the link below to read all about this conference. |
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04-03-2010 6th Support Meeting for families of rare chromosome disorders France Saturday April 17, 2010 8.30h-18.30 h la salle Victor Jara, Maison de la Challe, à Éragny sur Oise (95610). |
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28-02-2010 Family Support Meeting Belgium Sunday March 28, 2010 10.30h-17.00h at Technopolis in Mechelen. |
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09-02-2010 Stephanie Scoville is a Physical Therapy Coordinator who works at Clinical Associates of the Finger Lakes. She's the author of this presentation and gave us permission to publish her work on our website. |
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28-02-10 KS&A has stopped collecting responses in order to analyze the data and create the educational booklet. We hope to share the results with you as they become available. 12-01-2010 Invitation to participate in a research study that is being done in conjunction with KS&A by Kathleen Erskine, a graduate student in the Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College. |
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| The purpose of this study to identify the important aspects of 47, XXX/ 3X/ Triple X/ Trisomy X to discuss with girls when they first learn about their Trisomy X diagnosis. The end result of this study will be an educational booklet for parents to give their daughters when they first tell her about Trisomy X. |
07-01-2010 Abstract published of the NIMH team’s work comparing the girls with an extra X to the boys with an extra X. It’s also the first published work from Dr. Giedd and Dr. Lenroot addressing neuropsychological function for the girls. |
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28-12-2009 Unique, the rare chromosome disorder support group UK, has created a new and extended leaflet on Triple X Syndrome. It was recently published on their website. Click on this link to view the leaflet |
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17-12-2009 Contact Group Triple X Syndroom wishes all members and visitors of this website a Merry Christmas and a Happy New Year Thea and Ida |
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4-12-2009 NEW Report: Girls with XXX Report now out from the Oxford Extra Sex Chromosome Study This study included only families from the UK, 55 XXX girls participated. Funded by: Newlife Foundation In collaboration with UNIQUE |
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4-12-2009 Triple X Syndrome Community You have to join this community to be able to post messages on its forum or update its information. |
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27-11-2009 Info- and Support, Belgium A week ago the 3th Meetingday was held in Belgium. This time there were 3 guestspeakers present including 17 families. A few of them came from the Netherlands. Click on this link for a short resumé |
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23-11-2009 The story of Alexandra and her daughter Céline, born in 2009. Alexandra and Céline are living in the Middle East. Click on the link below to read Alexandra's story. |
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22-11-2009 Help KS&A Plan the 2010 Families' Conference They are beginning to plan the 2010 KS&A Families’ Conference. They would appreciate your input so they can make this the best conference ever. |
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| Please take a moment to fill out this very quick and easy survey, and share your preferences for what you believe makes a comfortable, affordable conference. Just click this link to go to the survey Jim Moore Executive Director |
22-11-2009 Occasionally KS&A supports the activities of other organizations. The eXtraordinarY Kids Clinic at Children’s Hospital in Denver is the world’s only multidisciplinary clinic dedicated to serving individuals who have X and Y chromosome variations and their families. |
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| In recognition that so many of the kids they have seen in clinic are talented artists, Dr. Tartaglia and the eXtraordinarY Kids Clinic at TCH are holding a fundraiser Art Contest for the X&Y children and adults. The winning artwork will then be featured on calendars, notecards, and other items that will give credit to the artist and be sold and given away to families to help support the clinic. Click this link to view the art contest Natalie Ayari eXtraordinarY Kids Clinic, The Children’s Hospital |
17-11-2009 Triple X Syndrome is on Facebook Sign up for Facebook to connect with Triple X Syndrome This is a group for parents, parents-to-be, other family members, and the women themselves to share regarding the diagnosis of an extra X. |
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29-10-2009 4 th Familyday Valentin A.P.A.C. France 28 november 2009 10.00h-18.00h l'Espace des Calandres à Éragny sur Oise (95) |
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| More information in French |
18-10-2009 3th Meetingday Belgium November 21, 2009 This day is organised by UZ Leuven. |
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| Two speakers will be present and parents of XXX girls have the opportunity to meet and share their experiences. More info in Dutch |
13-10-2009 Dr Sophie van Rijn, PhD who works in Leiden University (the Netherlands) and did a lot of research on the Klinefelter syndrome, has started a new study which includes XXY, XO and XXX. "Factors at risk in development of social skills within children (Cognition and Behavior)". KS&A is supporting this study. More info in Dutch Both our daughters will take part in this study. |
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08-10-2009 New article published Aug. 2009: "Prenatal diagnosis and prognosis of triple X syndrome: 47, XXX" written by Ben Hamouda H, et al, J Gynecol Obstet Biol Reprod (Paris) (2009), doi:10.1016/j.jgyn.2009.08.003 Service de pédiatrie, Hôpital Universitaire Tahar Sfar 5111 Mahdia- Tunisie. |
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06-10-2009 KS&A is moving its day-to-day operations to Aurora, CO. The principle reason for this is that the executive director lives in Colorado. Rather than continue coordinating his operational activities from two locations, Aurora, CO, and Coto de Caza, CA, it made sense to streamline their operations a bit and consolidate at one location. |
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| The move is a work in progress. Over the next week or so they hope to complete the transition. KS&A’s new mailing address: KS&A P.O. Box 4601047 Aurora, CO 80046-1047 The primary phone number will be: 303-400-9040 Fax: 303-400-3454 The corporation’s primary address will be unchanged: 11 Keats Court, Coto de Caza, CA 92679. Colorado’s office KS&A will function as a satellite of the California office. |
09-09-2009 There is a third speaker for the September 26th networking event: Professor Debra Tupe of Columbia University will talk about Occupational Therapy and Trisomy X. She will share the latest research results. |
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| If you plan to attend and have not yet registered, please do so soon. More info below. |
03-09-2009 Help ashed by Helen Clements Helen founded the Triple X Support Group UK in 1997. |
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| She's looking to write the next newsletter on adult and teenagers stories. If you would like to write something for this edition, please send it to her email address She thinks it would be interesting for parents of younger children to listen to how Triple X has affected life as you grew up, your achievements and pitfalls. Is there anyone who attended the KS&A conference that would be prepared to share the experience with others, a summary of events would be great for the newsletters. It's a struggle to find stories and information for this edition so any help would be gratefully received. |
02-09-2009 There were video tapes made for all of the major speaker presentations at the LA conference. These tapes are presently being edited and will become available later this fall. If you are interested, please send an email to KS&A |
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| Tapes from previous conferences are available in the KS&A store. |
27-08-2009 More accurate info on the Trisomy X Event !!! Metropolitan NY Area Trisomy X Networking Event for Moms, Dads, their daughters and other interested family members and friends. SWEETS: Sensational Women Extraordinary Girls Expressing Trisomy X Support Group |
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| Saturday, September 26, 2009: 10 am to 2 pm First Presbyterian Church, 2880 Crompond Road, Yorktown Heights, NY 10598 (45 miles north of NYC) |
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| Featuring presentations by Dr. Jay Lucker and Ms. Lennie Wilson, group discussions and networking. Please send the Registration Form to Sandy |
21-08-2009 More accurate details above!!! Trisomy X Event NY September 26th, 2009 The planning of this meeting in Westchester County, less than an hour's drive north from NYC, is almost finalized. The guest speaker will be Dr. Jay Lucker, the Washington DC-based audiologist/speech pathologist who specializes in auditory information processing. He has collected data on 18 Trisomy X girls. This is a wonderful opportunity to hear his presentation and ask questions. For more details of this event please contact Sandy |
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15-08-2009 The story of Cambria, born in Newport, Rhode Island. She was diagnosed at age 7 months and lives in Germany with her family. Her mother Micah Cummings wrote this story. Cambria is now 1 years and 10 months old. |
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21-07-2009 The conference schedule, orientation materials, info about an education project, research recruitment and presenters’ topics and biographies is posted on KS&A’s website |
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09-07-2009 Lily's mother wrote a beautiful update about her daughter, in English and in Spanish. Lily is born in Chili, adopted when she was almost 2 years old and now lives in Mallorca. |
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03-07-2009 Unique, the Rare Chromosome Disorder Support Group from the U.K. has published a children's cartoon-style book about chromosomes and chromosome disorders. It's a large file so they ask to please be patient. Click her to read the book. |
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03-07-2009 KS&A has a longstanding tradition of supporting qualified researchers in their efforts to recruit participants for their studies. Your willingness to contribute to research is crucial to helping KS&A fulfill its mission to help individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives. |
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| Recently the research committee approved several studies. They will soon send announcements about each of these studies and invite you to consider contributing to their success. They will also update their website to include information about each of these studies. Approved studies are posted here: www.genetic.org |
02-07-2009 We are very proud to announce the article, written by Drs. Maarten Otter with help from Prof. C. Schrander and Prof. L. Curfs in Maastricht, is published on July 1, 2009. "Triple X syndrome: a review of the literature" |
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| We hope to translate this review in Dutch soon. Our thanks goes to all autors, especially Drs. Maarten Otter for all the input and effort on behalf of XXX. This article can be found to download at: www.nature.com |
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Best wishes, Thea van de Velde en Ida Bakker Contactgroep Triple X Syndroom |
30-06-2009 The Trisomy X –specific family conference speakers (2009) are: |
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| Mina J. Avery, M.Ed "Educational Outcomes" Donald R. Bear, Ph.D. Director E.L . Cord Foundation Center for Learning and Literacy "Literacy & Reading" Marit Bierman, Ph.D standing in for Sophie Van Rijn, PhD "Social Skills Training"(Social Cognition and Emotional Regulation) Susan Howell, M.S. C.G.C. "Disclosure Matters" Jay R. Lucker, Ed.D. CCC-A/SLP Certified Audiologist "Auditory Perception & Processing" Auditory Processing Issues Nicole Tartaglia, M.D."Medical and Developmental Outcomes" Rebecca Wilson, Psy.D."Psychological Outcomes" Andrew Yellen, M.D."Social Isolation" Audrey L. Zapletal, MS, OTR/L Certified Occupational Therapist "Sensory Processing & Integration" Sensory Processing Issues |
18-06-2009 Through the internet we met Micah Cummings. Micah is an american woman, lives in Germany, is a photographer and runs a family with 3 kids and has her own website. On this blog she also tells about her daughter who has XXX. Micah agreed in writing her personal story for our website. We keep you informed. |
18-06-2009 Triple X Meetingday in the Netherlands On June 13, our third Family Meeting was held in Bennekom, Holland. There were 18 families present, among them 11 Triple X females in the age 0-38 years old. Click on this link for a summary of this day. |
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28-05-2009 List of speakers at the LA Conference has been added. |
23-05-2009 The story of Stella, a 19 year old XXX woman who lives in Scotland. Stella knows she has an extra x since she was 8 years old. |
Cathy's Middle school transition IEP, May 2009 |
17-04-2009 2009 “I Love L.A.” Families Conference For x and y chromosome variations, the first ever joint conference between AAKSIS, KS&A and the XXYY Project. July 24 through 26 Mount St. Mary’s College, Los Angeles, CA Registration NOW OPEN! |
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| Register through KS&A's website and REGONLINE'S secure connection. EARLY REGISTRATION DEADLINE: may 31, 2009 (after which rates increase) To register and for more information go to www.genetic.org |
14-04-2009 University of Nevada, Reno Educational Development In Individuals with Extra X Chromosomes A thesis submitted in partial fulfillment of the requirements for the degree of Master of Education in Literacy Studies. By Mina Avery and Dr. Donald R. Bear/Thesis Advisor December, 2008 |
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14-04-2009 2009 “I Love L.A.” Families Conference For x and y chromosome variations, the first ever joint conference between AAKSIS, KS&A and the XXYY Project. July 24 through 26 Mount St. Mary’s College, Los Angeles, CA More info at www.genetic.org Registration Opening Soon! |
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03-04-2009 Triple-X Family Meetingday June 13, 2009 from 11.00h-16.00h De Kraatsschool in Bennekom (Gld) The Netherlands |
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| 11.00h Welcome 11.45h "The Triple X Syndrome", a presentation by drs M. Otter 12.15h "Diagnose Triple X, do you tell or not" by Thea van de Velde and Ida Bakker of Contactgroep Triple X Syndroom 13.00h Lunch 14.15h Language-Speechproblems and problems within short term memory and its consequences on socially emotional development", a presentation by drs C. Engbers and drs. H. van der Schoot (medical pedagogy) |
26-03-2009 Bérénice, a 17 year old Triple X female from Belgium made it to the semifinal of "TOPMODEL BELGIUM". Congratulations ******************** |
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| Her story was published on our website since july 2004 and her mother proudly told us that Bérénice recently was casted out of many participants to take part of this modelcontest which will be held on May 15-16, 2009 More info, mostly in French, on www.topmodelbelgium.be |
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25-03-2009 Help asked by Helen Clements Helen founded the Triple X Support Group UK in 1997. She would like to make a start on producing the Next Newsletter and thought it might be an idea to try and put together a newsletter with stories from teenagers and adults. |
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| If you would like to contribute something, please send it to her on her email address by the end of April 2009. |
20-03-2009 3th Meetingday The Netherlands On Saturday June 13, 2009 there will be an opportunaty to meet other people/families dealing with Triple X. This event will be held in Bennekom (Gld). This summer our Contactgroup/Website celebrates its '5 th birthday' so it would be nice to share this with our members. More details will follow. Thea van de Velde and Ida Bakker |
01-03-09 The story of Emilie. Emilie lives in the USA and was diagnosed in 2008. Click on the link below to read her story. |
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20-02-2009 2009 "I Love LA" Families’ Conference July 24, 25 & 26, 2009 Mount St. Mary’s College - Chalon Campus in Brentwood Hills, CA |
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| For the first time, AAKSIS, the XXYY Project and KS&A will work together to put on a joint conference! More information to come at www.genetic.org |
21-01-2009 Review Autumn Festivity for XXX girls in Germany translated in Spanish. |
15-12-2008 Contact Group Triple X Syndroom wishes all members and visitors of this website a Merry Christmas and a Happy New Year. Thea van de Velde and Ida Bakker |
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2-12-2008 Overview Unique conference 2008 Rare Chromosome Disorder Support Group On page 7 of this report you can find a summary of the workshop "Sex Chromosome Aneuploidies". |
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| This workshop was presented by Victoria Leggett, Department of Experimental Psychology, Oxford, Dr Debbie Shears, Clinical Geneticist and Vishakha Tripathi, Genetic Counsellor. |
25-11-2008 Report Autumn Festivity for XXX girls in Germany Review and impressions of autumn festivity and exchange of experiences for families with XXX-girls on 20th of September 2008 at genetikum in Neu-Ulm |
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16-11-2008 Support Meeting France Next year, on May 30, the 8th Meetingday for individuals with Klinefelter-, Turner-, XYY or XXX Syndrome will be held in France. More information in French |
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8-10-2008 Educational Development Study As we mentioned earlier Mina Avery is writing a thesis on the educational development of Triple X girls. She's down to the wire on data collection and desperately need participants. Simply go to www.anextrakiss.com and follow the directions. You read and sign consent forms, give your daughter a brief spelling test, copy her standardized test scores and mail the whole package to the Literacy and Learning Center at the University of Nevada, Reno. |
11-09-2008 The story of Katie Katie was born in 1968, dx by amnio. From birth untill she was 18 years old she took part in the Toronto Study. More info in this article written in 1983 and this article from 1995. She is the proud mother of a beautiful baby girl. |
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12th Family Conference Weekend UK Rare Chromosome Disorder Support Group Friday 31st October –Sunday 2nd November 2008 The Daventry Hotel Sedgemoor Way Daventry Northamptonshire NN11 0SG England More info at www.rarechromo.org Main Conference Programme |
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3-9-2008 Translation of the Denver Conference Report into Spanish. |
Unfortunately this meeting was cancelled New York Tri-State Regional Support Group For X+/Y+ Chromosomal Disorders For families and individuals of all ages affected by XXY (Klinefelter Syndrome),XXX (Trisomy X), XYY, and variations. 10 am to 3:30 pm (registration 9:30 am) Sunday, September 21, 2008 The Wang Center Stony Brook University Stony Brook, NY 11794 |
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14-8-2008 Follow-up story of Linda written by her mother Thea van de Velde. This update was written in July 2007 and recently translated in English. Linda had just turned 9 in April that year. |
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14-8-2008 Mina Avery wrote a summary of the Denver Conference and the story of her XXX daughter Rowena. We want to thank her for all the effort and the opportunity to publish her work on our website. |
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14-8-2008 The DVD’s of the Denver Conference can be ordered within time from KS&A at www.genetic.org |
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02-08-2008 Educational Development in Individuals with Extra X Chromosomes Dr. Donald Bear, director of The Center for Learning and Literacy at the University of Nevada, Reno and student investigator, Mina Avery are conducting a study of the influence of extra X chromosomes on reading development. |
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29-06-2008 Myndi Fitzgerald is putting together a binder of information for the August 2008 Conference in Denver and will be adding a section for personal stories. If you would like to share your son's/daughter’s personal story and/or include a picture of him/her, please forward them to Myndi at the7fitzs@yahoo.com by July 20th. |
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| This was a favorite from prior conferences. Please let Myndi know if you have any questions. We look forward to reading your stories in the binder! Kathryn D. Henry Executive Administrator KS&A |
24-06-2008 We are happy to let you know that Kathi Henry, executive administrator of KS&A, has sent us the KS&A Brochure of this conference. This Brochure includes registration forms, conference agenda and conference rates. It can be downloaded by clicking on the link below. |
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17-06-2008 Triple X Family day in Germany on 20-9-2008 in Neu-Ulm(Bayern). |
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| 17-6-2008 Meeting in France, Spring 2009, for people with Klinefelter-, Turner-, XYY- and Triple X Syndrome. |
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12-06-2008 Swedisch information available The mother of a 4 year old Triple X girl, who's diagnosed recently, created a blog on the internet. She tries to translate information and debate her thoughts on the subject. trippelx.wordpress.com |
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10-06-08 Cathy's mom wrote an update in June 2008, on Cathy's 10th birthday. |
10-06-08 Update on the Family Conference in Denver |
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30-5-2008 The Booklet "Triple X Females, an oriëntation" by Johannes Nielsen from the Turner Center in Danmark is now translated into Spanish. |
16-05-08 Developmental Milestones Everybody is talking about reaching milestones every now and then. Here you can find the normal milestones for children from 0/5 years old. |
Family Meetingday Belgium 2008 On the first day of Summer, June 21, the second Trisomy-X Support Meeting will be held at "Het Dennenhof" restaurant and playground just outside Domein Bokrijk in Genk, Belgium. Visitors from outside Belgium are also welcome. More information about this Meeting Day (so far only in Dutch) on: |
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10-05-2008 The Pre-registration Denver Conference link has been posted on the KS&A website at www.genetic.org |
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06-05-2008 The story of Debby. Debby was born in 1978, lives in The Netherlands and was diagnosed Trisomy-X when she was 28 years old. |
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06-05-2008 The story of Elvira, daughter of Debby. Debby has Trisomy-X. She writes about her pregnancy, the birth and the first months of Elvira's life. |
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02-05-2008 The "Normal Syndrome" Having a child with a chromosome anomaly is scary. What to expect, what will be the effect of the syndrome etc. Most parents start to search for every information they can get hold of. Some of this information will put them at ease, but more likely they will come across a lot of information about worst case scenarios. And ofcourse, all of this information is true, but not for one child or person. A syndrome is a complex of symptoms, none of the persons with this specific syndrome will have them all. Some are affected mildly, some are affected more seriously. And this is also the case with so-called 'normal' babies. I feel that everybody should read this article called the "Normal Syndrome" I found on the internet. I contacted the author and he gave me permission to publish it. Maybe it will put some thoughts into perspective. |
26-04-2008 KS&A Conference in Denver, CO August 8, 9 and 10, 2008 Online pre-registration will be available on the KS&A Website within two weeks. Please be patient while they continue setting up the schedule and registration page. Basic Agenda and list of Speakers at: |
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25-04-2008 Where possible, we changed the links of the books on Books & Literature to Amazon.com, which has an Online Reader. That makes it possible to look inside the book, before one decides to buy it. |
18-04-2008 Little Yellow Book is now available in Spanish. El Librito Amarillo www.rarechromo.org |
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17-04-08 The story of Lily. Lily was born in 1997 in Chile and currently living in Mallorca (Spain) Her story is written by her mother, in English and in Spanish. |
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8-4-2008 The story of Mélijade, a 12 year old Triple X girl who lives in Québec, Canada. Her mother doesn't speak English so she wrote it in French. |
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8-4-2008 Three personal stories published in Spanisch. |
27-03-2008 Unique Study: Development of children with an extra sex chromosome. The aim of this study is to find out whether children who have an extra X or Y chromosome experience any problems or difficulties during their childhood. |
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20-03-2008 Family Meeting Day on May, 17 in France. For families related to rare chromosomal anomalies. More information in French at www.valentin-apac.org |
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17-03-2008 KS&A Family Conference in Denver, Colorado, on August 8,9 and 10 of this year. Tracks for: XXY, Trisomy X and XYY Adults. Join for: Seminars, Clinic, Conversation and FUN! More details will follow. We'll keep you informed. Thea van de Velde and Ida Bakker |
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14-03-08 More articles and links in the Spanish section. |
11-03-2008 Now available: our Trisomy-X leaflet in easy to read Castellano (Spanish). |
11-03-2008 The second part of the story of Linda, written in october 2005 is translated into English now. Hope to translate part 3 soon. |
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07-03-2008 The addition of the Spanish Section. |
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07-03-2008 Study Shows Variety of Approaches Help Children Overcome Auditory Processing and Language Problems. Article published: 30-1-2008 A new study sponsored by the National Institute on Deafness and Other Communication Disorders (NIDCD). More info at: www.nih.gov |
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03-02-2008 Report: Triple X Study Day 30-9-2007 Oxford U.K. Written by a mother who attended this day. Twenty families from across the UK participated. |
Dr Ratcliffe Questionnaire Study – Findings 2006 Compiled by Helen Clements |
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KS&A Scientific Meeting in Dallas, Texas. |
18-01-2008 The World's leading website on learning disabilities, learning disorders and differences. Parents and teachers of learning disabled children will find authoritative guidance on attention deficit disorder, ADD / ADHD, dyslexia, dysgraphia, dyscalculia, dysnomia, reading difficulties, speech and related disorders. www.ldonline.org |
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16-01-2008 Tessa-Jade, a 2 year old XX/XXX girl who lives in New Sealand. Her grandmother wrote an update of her story. Click on the link below to read how she's doing. |
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09-01-2008 Triple X Syndrome - A Bibliography and Dictionary for Physicians, Patients, and Genome Researchers. by ICON Health Publications Published: Friday, July 20, 2007 More info at www.booksonboard.com |
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| Merry Christmas and a Happy New Year The Dutch Support Group wishes all visitors of this website a very special and warm 2008. We're gratefull for all the new contacts, our wonderful international friends and provided knowledge on XXX in the past year. |
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19-12-2007 Atlas of Genetic Diagnosis and Counseling: XXX Syndrome Publisher: Humana Press Pages: 1061-1063 Subject Collection: Medicine SpringerLink Date: Saturday, November 24, 2007 |
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18-12-2007 Family meeting day France, December 1th; A possibility to meet other people dealing with a sex chromosome anomaly was held , for the second time, in France. There were 52 participants, among them 13 children. There were no XXX participants. |
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17-10-2007 NIH study on twins (one or both having a sex chromosome variation) |
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28-9-2007 Next Sunday there will be an event for parents of XXX girls/young adolescents in Oxford, U.K. It's an opportunity to meet and attend presentations. Those who are interested in the programme and the list of speakers can ask a copy at this emailadress |
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| 25-9-2007 The N.I.H. study in Bethesda, Maryland is closed. There were 37 Triple X participants, the largest sample of these girls so far for an MRI study on the brain. Results will be published later this fall. We have been in contact with Jonathan Blumenthal and he gave us permission to publish the results of this study on our website. We will keep you informed. Thea van de Velde and Ida Bakker |
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New York City/Tri-State Regional Support Group Meeting on October 20, 2007 Click on the link below for more information. |
August 2007 You can find the report (so far only in Dutch, but we will translate it soon) and the photobook (click on the little picture) of our first Belgium Meeting Day can be found on: |
August 2007 Through the internet we met Martina. She lives in Vienna, in Austria and is the mother of a 3 year old daughter with Trisomy X. Martina is helping us with the German part of our website. So far she has corrected our German, wrote the story of her daughter Lydia and translated the stories of Linda and Fardau. |
July 2007 The story of Christine Christine (40) took part in the Denver study described in 47,XXX What's the prognoses. Click here to read her story |
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| July 2007 First Family meeting day in Belgium on August 26, 2007 Click here to read more |
| July 2007 N.I.H. study on Trisomy X by Jonathan Blumenthal in Bethesda, Maryland, USA Click here to read more about this study |
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| July 2007 Report: Family meeting day in The Netherlands, june 2007 Click here to read the report on the Family Meeting Day |
| June 29, 2007 The story of Rachel, born in 1988, dx at age 6 Rachel just graduated High School. Click here to read the story of Rachel. |
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| June 2007 New Triple-X study in the U.K. Click here to read more about this study. |
| May, 14 2007 New: Information leaflet in English; Diagnoses Triple-X, "What can be expected" Click here to download this information leaflet |
| March, April, May 2007 Complete renewal of the English part of our website There is much more information in English available now on www.triple-x-syndroom.nl/english |