WHAT'S NEW ON THIS SITE
24-12-1016



"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:


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



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



11-03-2016
Nemours eXtraordinarY Kids Clinic at Alfred I. duPont Hospital for Children in Wilmington, DE



23-12-2015
New British article published:
"Children with sex chromosome trisomies:
parental disclosure of genetic status".



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.



14-10-2015
Video's Leiden University at the Frambu Conference in Norway, April 15, 2015:

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

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.


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.



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


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

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.


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

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



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


30-10-2014
"Things that make me special: A picturebook for girls with Trisomy X".

"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



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.

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


09-09-2014
New brochures by AXYS about several sex chromosome aneuploidies: Triple X Syndrome



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


14-07-2014
Clinical research: Extra X impairs awareness of others' minds
Kate Yandell, Simons Foundation Autism Research Initiative.
June 2014


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.


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 :

"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.

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.

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.

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


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

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


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.


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


06-10-2013
New York/New Jersey/Connecticut Area
Support Group for XXY, XYY, and XXX
Sunday, October 27, 2013

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'.


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



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.



11-09-2013
Personal story of Julie
Julie is 10 years old and lives in France.
Her mother Alison wrote this French story.



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

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.



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.



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.

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


15-04-2013
New study by UCLA and KS&A:



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)



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


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


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



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.



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.


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


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.



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


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:



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.


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


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

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



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


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.



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.



11-07-2012
5th Support Group Family Meeting, The Netherlands
Saturday, Sept 1, 2012
11.00 h - 17.00 h
Conferentieoord Deel 4
Zwartsluis



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


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:



29-03-2012
Announcing the latest issue of KS&A's Newsletter,
"The Even Exchange".


www.genetic.org


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


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



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


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



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


10-02-2012
"What is Triple X Syndrome?" in Finnish.



07-02-2012
5th Triple-X Meeting/Supportday The Netherlands

Saturday Sept 1, 2012
Conferentieoord Deel Vier

www.deelvier.nl


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

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.


22-12-2011
Contactgroep Triple-X Syndroom wishes everyone a warm Christmas and a New Year filled with love, health and happiness.



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


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


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


27-11-2011
"Sex chromosome trisomies in Europe: prevalence, prenatal detection and outcome of pregnancy"

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


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.


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.


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


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!

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.



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


27-09-2011
A closed discussion forum for people with or people who have daughters with Trisomy X.
trisomyx.proboards.com


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.



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!


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


01-08-2011
Neurodevelomental Diagnostic Center for Young Children
Led by Dr. Carole Samango-Sprouse, a world-renowned specialist in neurogenetic and developmental disorders.

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.


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.

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.

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!



11-06-2011
Child Psychiatry Branch, National Institute of Mental Health, National Institutes of Health, Bethesda, Maryland, USA. 2009

"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.


06-06-2011
Cathy's mother wrote an update of her daughter
who turned 13 today.

Congratulations !!!!!!!!!



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.


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


26-05-2011
Trisomy X Syndrome and Social Security Disability

www.socialsecurity-disability.org
www.socialsecuritydisability.tv


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".



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.

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".


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)"


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


09-03-2011
Riet, the grandmother of Tessa-Jade, wrote an update about her granddaughter. Tessa-Jade turned 5 years old in january.



22-01-2011
More personal stories translated in spanish.



18-02-1011
9th Meeting XXY-XXX-X0-XYY France
Saturday May 7, 2011
à Éragny sur Oise

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


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.



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


05-01-2011
Family Conference Denver CO
July 29-31, 2011


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.



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



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


24-11-2010
Personal story of Emily in German.
She was born on July 10, 2007



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.

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.


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.


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


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''



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!



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


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!


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


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.



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


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.



13-08-2010
New articles published:

- July 23, 2010
- February 16, 2010



16-07-2010
Brain and Cognition Research Study

Brain Development and Learning Difficulties in
XXY/Klinefelter Syndrome
and Trisomy X/Triple X



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.


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.

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

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


28-05-2010
2010 "Call of the Wild" Families' Conference
on X and Y Chromosome Variations


Conference Details and Registration Information


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"



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.

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.



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).


28-02-2010
Family Support Meeting Belgium
Sunday March 28, 2010
10.30h-17.00h
at Technopolis in Mechelen.


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.



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.

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.



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


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


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


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.


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


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.



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.

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.

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.


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)

More information in French


18-10-2009
3th Meetingday Belgium November 21, 2009
This day is organised by UZ Leuven.

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.


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.



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.

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.

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.

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

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

Saturday, September 26, 2009: 10 am to 2 pm
First Presbyterian Church, 2880 Crompond Road, Yorktown Heights, NY 10598 (45 miles north of NYC)

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


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.



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


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.



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.


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.

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"

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

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:

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.


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!

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



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!


03-04-2009
Triple-X Family Meetingday
June 13, 2009 from 11.00h-16.00h
De Kraatsschool in Bennekom (Gld)
The Netherlands

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 ********************

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


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.

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.



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

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


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".

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



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


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.



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


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



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.



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.



14-8-2008
The DVD’s of the Denver Conference can be ordered within time from KS&A at www.genetic.org


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.



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.

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.



17-06-2008
Triple X Family day in Germany on 20-9-2008 in Neu-Ulm(Bayern).

17-6-2008
Meeting in France, Spring 2009, for people with Klinefelter-, Turner-, XYY- and Triple X Syndrome.


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


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



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:



10-05-2008
The Pre-registration Denver Conference link has been posted
on the KS&A website at www.genetic.org


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.



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.



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:



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


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.



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.



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.



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


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


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.



07-03-2008
The addition of the Spanish Section.



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


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



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



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.



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



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.



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


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.



17-10-2007
NIH study on twins (one or both having a sex chromosome variation)



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



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


 


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


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


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.


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


[English section]