Login    Normal Text Large Text Larger Text
 Hello and Welcome

Family Support

We are the UK registered charity providing support and information to families whose children and relatives have Fragile X Syndrome.
 
We want families who have been diagnosed to have the opportunity of support from those who know the problems, and to have access to the fulll range of information about the syndrome, including the latest medical, psychological and educational research findings.
 
With a fuller understanding of the condition parents can be far more constructive and effective in helping their children to reach their full potential.

What would you like to do?


Information about fragile X

We have introductory booklets which describe the effects and causes of Fragile X Syndrome.

These booklets may either be downloaded from the Information page of this website; or, alternatively, you may wish to request them from us by downloading our  Publication List/Order Form (which will open a pdf file in a new window) from where you can request them. All enquiriers may obtain a free copy each of these booklets, and there may be a charge fpr further copies, according to the reason for the need for extra copies. Alternatively site visitors may wish to download these booklets from the 'What is fragile X?' page of this site.

We also have many other papers giving more detailed information about different aspects of fragile X, such as behaviour, Fraxe, education, communication, sensory processing problems, girls & women with fragile X, adolescents and adults, genetics, carriers of fragile X, and health related  issues.

A small sample of these publications and papers can be viewed and printed from the 'What is fragile X?' page on this website, from where it is also possible to access the full list and print it to order further papers that are of interest to you. A small charge is made for some of these papers to cover our photocopying and postage costs. 

Wendy (wendy@fragilex.org.uk) and Jane (jane@fragilex.org.uk) and Sandra (sandra@fragilex.org.uk), our Family Support Workers, will be happy to give advice on the papers which are most appropriate for your needs.  

ALL our publications have been written by or in consultation with the Society's specialist medical, scientific and educational advisors, fragile X researchers and clinicians.

Also available to order via our Publications List/Order Form:

  • Award winning DVD: 'The Fragile X Syndrome' (running time 20 mins) @ £7.50 (inc p&p for one copy of the DVD)   
  • Details about how to obtain our BOOK: 'Educating Children with Fragile X Syndrome' Personalised support and information service

Our Family Support Workers Wendy (who helps with children matters), and Jane (who provides support for adults), and Sandra, who provides support for children and adult issues for families in Scotland only, have lots of experience of helping our families. They will be pleased to help you with information and support that is specifically tailored to suit your particular individual needs.

Contact other family members

Families, especially newly diagnosed families, often ask us whether it is possible for us to put them in touch with other families, preferably in their own area, who they can contact and with whom they can share experiences and local knowledge.

Contact with other fragile X families is possible in the following ways:

  • Ask Wendy and/or Jane, and/or Sandra (sandra@fragilex.org.uk), our Family Support Workers, to put you in touch with  other family members of the Society under our 'Families Helping Families' scheme. These volunteer families all have personal experience of fragile X and are willing to share these with other famiy members of the Society. This service is only available to Family members of The Fragile X Society 
  • Join our on-line Forum  (which is open only to Family Members)
  • Come to our Family Conferences 

Fragile X events 

The full list of events are listed in our 'Events' page, and include information about

  • the support group meetings held in Chelmsford, Essex; usually on the first Monday of every month;  for the parents and carers of children or adults with fragile X . For more details please contact Wendy Bowler on 01371 875100 or email Wendy at wendy@fragilex.org.uk
  • forthcoming conferences, where you have the opportunity to meet other family members, and receive news about fragile X from various professionals and other members
  • fundraising events organised by our friends and family and professional members

Family stories

Our family members tell us that our Newsletter is a lifeline and immediately it arrives in the post they sit down to read the articles written by families.

Here are seven of those articles – click on the PDF symbols to read the stories which will appear in a new window: 

Ewan & Harry’s Story - specially written for Jeans for Genes in 2006 when Ewan and Harry were 6 and 4 years old by their mother  Liz      

Download 'Ewan & Harry's Story' PDF file

Starting School - by Liz who tells us about planning and preparing her son, Ewan, for primary 1 in a mainstream school     

Download 'Starting School' PDF file 

Arianne’s Story - the experience of a mildly affected carrier, looking back at her time at school and college and looking to the future      

Download 'Arianne's Story' PDF file 

My Week by Andrew - who tells us about his week at college in 2004 and his mother fills in the gaps!  

Download 'My Week by Andrew' PDF file

Gardening - by Ian, and Ian’s sister adds…….   

Download 'Gardening' PDF file

Fragile X, not fragile legs - a young doctor's experience of fragile X by Lucy whose brother has fragile X

Download 'Fragile X, not fragile legs' PDF file 

Rose's Story - about her son, Marshall, who is 5 years old  

Download 'Rose's Story' PDF file
See Also

Support and Information for Carriers of fragile X

Help and Support for Newly Diagnosed Families

Help and Support for Carriers

 

Family Support

We are the UK registered charity providing support and information to families whose children and relatives have Fragile X Syndrome.
 
We want families who have been diagnosed to have the opportunity of support from those who know the problems, and to have access to the fulll range of information about the syndrome, including the latest medical, psychological and educational research findings.
 
With a fuller understanding of the condition parents can be far more constructive and effective in helping their children to reach their full potential.

What would you like to do?


Information about fragile X

We have introductory booklets which describe the effects and causes of Fragile X Syndrome.

These booklets may either be downloaded from the Information page of this website; or, alternatively, you may wish to request them from us by downloading our  Publication List/Order Form (which will open a pdf file in a new window) from where you can request them. All enquiriers may obtain a free copy each of these booklets, and there may be a charge fpr further copies, according to the reason for the need for extra copies. Alternatively site visitors may wish to download these booklets from the 'What is fragile X?' page of this site.

We also have many other papers giving more detailed information about different aspects of fragile X, such as behaviour, Fraxe, education, communication, sensory processing problems, girls & women with fragile X, adolescents and adults, genetics, carriers of fragile X, and health related  issues.

A small sample of these publications and papers can be viewed and printed from the 'What is fragile X?' page on this website, from where it is also possible to access the full list and print it to order further papers that are of interest to you. A small charge is made for some of these papers to cover our photocopying and postage costs. 

Wendy (wendy@fragilex.org.uk) and Jane (jane@fragilex.org.uk) and Sandra (sandra@fragilex.org.uk), our Family Support Workers, will be happy to give advice on the papers which are most appropriate for your needs.  

ALL our publications have been written by or in consultation with the Society's specialist medical, scientific and educational advisors, fragile X researchers and clinicians.

Also available to order via our Publications List/Order Form:

  • Award winning DVD: 'The Fragile X Syndrome' (running time 20 mins) @ £7.50 (inc p&p for one copy of the DVD)   
  • Details about how to obtain our BOOK: 'Educating Children with Fragile X Syndrome' Personalised support and information service

Our Family Support Workers Wendy (who helps with children matters), and Jane (who provides support for adults), and Sandra, who provides support for children and adult issues for families in Scotland only, have lots of experience of helping our families. They will be pleased to help you with information and support that is specifically tailored to suit your particular individual needs.

Contact other family members

Families, especially newly diagnosed families, often ask us whether it is possible for us to put them in touch with other families, preferably in their own area, who they can contact and with whom they can share experiences and local knowledge.

Contact with other fragile X families is possible in the following ways:

  • Ask Wendy and/or Jane, and/or Sandra (sandra@fragilex.org.uk), our Family Support Workers, to put you in touch with  other family members of the Society under our 'Families Helping Families' scheme. These volunteer families all have personal experience of fragile X and are willing to share these with other famiy members of the Society. This service is only available to Family members of The Fragile X Society 
  • Join our on-line Forum  (which is open only to Family Members)
  • Come to our Family Conferences 

Fragile X events 

The full list of events are listed in our 'Events' page, and include information about

  • the support group meetings held in Chelmsford, Essex; usually on the first Monday of every month;  for the parents and carers of children or adults with fragile X . For more details please contact Wendy Bowler on 01371 875100 or email Wendy at wendy@fragilex.org.uk
  • forthcoming conferences, where you have the opportunity to meet other family members, and receive news about fragile X from various professionals and other members
  • fundraising events organised by our friends and family and professional members

Family stories

Our family members tell us that our Newsletter is a lifeline and immediately it arrives in the post they sit down to read the articles written by families.

Here are seven of those articles – click on the PDF symbols to read the stories which will appear in a new window: 

Ewan & Harry’s Story - specially written for Jeans for Genes in 2006 when Ewan and Harry were 6 and 4 years old by their mother  Liz      

Download 'Ewan & Harry's Story' PDF file

Starting School - by Liz who tells us about planning and preparing her son, Ewan, for primary 1 in a mainstream school     

Download 'Starting School' PDF file 

Arianne’s Story - the experience of a mildly affected carrier, looking back at her time at school and college and looking to the future      

Download 'Arianne's Story' PDF file 

My Week by Andrew - who tells us about his week at college in 2004 and his mother fills in the gaps!  

Download 'My Week by Andrew' PDF file

Gardening - by Ian, and Ian’s sister adds…….   

Download 'Gardening' PDF file

Fragile X, not fragile legs - a young doctor's experience of fragile X by Lucy whose brother has fragile X

Download 'Fragile X, not fragile legs' PDF file 

Rose's Story - about her son, Marshall, who is 5 years old  

Download 'Rose's Story' PDF file
See Also

Support and Information for Carriers of fragile X

Help and Support for Newly Diagnosed Families

Help and Support for Carriers

 

 Family Support
Wendy ....

Support for Children

and Jane ....

Support for Adults

... and Sandra - family

support for families in

Scotland.

 

Wendy ....

Support for Children

and Jane ....

Support for Adults

... and Sandra - family

support for families in

Scotland.

 

Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA
DISCLAIMER:
Great care has been taken in the compilation and preparation of this site to ensure that the information included is accurate. However The Fragile X Society cannot accept responsibility for any errors or omissions. The information is provided for education and information purposes and you should obtain further information from your medical practitioner. We do not knowingly reproduce inaccurate or libellous material. Any links to external websites have been carefully selected but are provided without any endorsement of the content of those sites.

By using this site, you agree we can set and use cookies. For more details of these cookies and how to disable them, see our Cookie Policy.