The 2011 European Fragile X Awareness Day was on 18 November. For 2012 it will be on Wednesday 10th October.
Our long term aim is to make the annual Fragile X Awareness Day a "brand" which is readily recognised in Europe so that awareness of the condition becomes widespread amongst its peoples.
Closer to the time we expect to prepare an "informational" which gives the relevant information about fragile X, for use by anyone who wishes to raise awareness of the condition.
Furthermore, our fragile X leaflets will be available widely, and we hope that these find their way to people who know little or nothing about fragile X, and spur them onto finding out even more by vising our website.This can only be a good thing; since awarenes must bring with it increased understanding and special care.
Additionally we shall of course use our Facebook presence and twitter, hoping that people will re-tweet and so widen the net of message receivers.
Here is a brief message from Tim Potter, the Managing Director of The Fragile X Society:
European Fragile X Awareness Day
Wednesday 10th October 2012
Fragile X is the most common form of inherited learning disabilities. It is estimated to impact at least 1 in 4000 males and 1 in 6000 females.
Very often it remains undiagnosed, or misdiagnosed as autism, and is misunderstood by many professionals. Fragile X is the most common identifiable cause of autistic spectrum conditions worldwide.
October 10th 2012 is Fragile X Awareness Day when families living with Fragile X will be seeking to raise awareness of the condition. This is an Awareness Day across Europe with 16 countries involved.
For more details please contact Tim Potter, Managing Director, The Fragile X Society, 01371 875100.
Tim Potter
Managing Director and Fund Raiser
Grant awareded to The Fragile X Society
April 2012: The Fragile X Society is celebrating after receiving a grant from Genetic Disorders UK, the national charity that organises Jeans for Genes Day. This donation will be used to fund our new booklet, “Fragile X Syndrome: An Introductory Guide to The Educational Needs and How They can be Met”.
This year Jeans for Genes Day will be held on Friday 5th October.
What's else is New?
The rest of this page gives further details about the 'What's New?' items listed above.
Media News
X syndrome: 'It took 17 months to get his diagnosis'
November 2010 - Scotland On Sunday
"REEM Waines said she and her husband had never heard of FXS before Kenz was diagnosed three years ago." ...... Read the remainder of this article here.
Family donation to Genetic Research
Selkirk Weekend Advertiser - November 2010
"A family has pledged a six-figure sum to a new research centre into a little-known genetic condition affecting their son"...... The full article in the Selkirk Weekend Advertiser can be found here.
The same story is also covered in this video clip "Family donates six-figure sum to learning difficulties research".
We have to stay ten steps ahead of Kieran
Excerpts from an article by Catherine Salmond, Edinburgh Evening News, 19 February 2010
"THIS is Mummy," six-year-old Kieran Dewar says, clutching his mum Nerina by the waist momentarily, before pointing at her stomach. "And this is her tummy."
The lively youngster then bounces off to the family sitting room to watch a television programme. Nerina watches him go, shaking her head with a smile: "He's got quite a thing about tummies at the moment," she says.
This is how this article starts, and readers then get moving descriptions of the ways in which Kieran affects the daily lives of his parents Stuart and Narina Dewar.
Please click the link below to read the whole article....
http://edinburghnews.scotsman.com/features/We--have-to-stay.6088090.jp
Research news
Research hub to tackle rare genetic illness - Meeting Date confirmed
December 2010
GREAT NEWS : The date for a meeting for families affected by fragile X at the newly opened Patrick Wild Centre for Research into Fragile X Syndrome (see press items below) at The University of Edinburgh, has been confirmed to be January 19th 2011. The objective is for the Centre to engage with individuals and thier families affected by fragile X, as they believe that this is key to them being able to be a successful research facility.
The Fragile X Society is linked to this centre and would encourage all those who are able to, to attend this event. The meeting will commence at 2.30pm in Room G.07A of the Informatics Forum, 10 Crichton Street, Edinburgh, EH8 9AB, U.K. Please note that if you wish to participate it is not simply a case of turning up on the day: to attend, you must notify the Centre (not The Fragile X Society) as detailed in this file from the Centre.
November 2010 - Scotland on Sunday.
By Lyndsay Moss, Health Correspondent
"A RESEARCH centre aimed at finding new treatments for a distressing genetic mutation with strong links to autism is to open in Scotland this week following a determined fund-raising campaign." The full deatils can be found here.
***
The same story is also covered in this video clip "Family donates six-figure sum to learning difficulties research".
Brain clue may explain condition's 'hug avoidance'
Febuary 2010 - Wide coverage
This has been covered by a number of news articles, most notably, by BBC News, The Daily Mail, and many other productions worldwide.
*************************************************************************************
*************************************************************************************
See also the Research News and News Room pages for more news items related to fragile X.
*************************************************************************************
News about the next Newsletters
The Society's newsletter, containing the latest information we have about all matters to do with fragile X (including 'Family Stories' penned by our ever-indulgent family members) and details of any forthcoming confereces, is produced every 2 months and distributed free of charge to our family, professional, and overseas members.
We hope you like the new format; we have listened to your feedback and have hopefully successfully made some improvements.
Society News
Chelmsford Family Support Group Meetings
The family support group meeting for parents and carers of children and adults with fragile X are normally held on the first Monday of every month, in Chelmsford, Essex, at
Chelmsford Voluntary Services
First Floor, 47 Broomfield Road, Chelmsford, Essex, CM1 1SY
Unfortunately the event can be attended by adults only, as the venue is not suitable for children. If you would like to, and are able to attend, we will be pleased to welcome you. Please Contact Us for more details.
If you are interested in setting up a support group in your area then please contact Wendy Bowler on 01371 875100, or at wendy@fragilex.org.uk
Fragile X Merchandise
We are pleased to offer items for sale which help our families to raise awareness of fragile X, as we are certain that a greater awreness of fragile X amongst the general public would make life easier for our families. Furthermore, items such as the Fragile X Polo Shirt, Fragile X Awareness Cards, and our Christmas cards are also useful when undertaking fundraising activities for the Society; as these help to keep our funds going so that we can contine to support our families.
Free Books - Gift books for members who have children with fragile X
As those of you who receive our newsletters will remember , an article from our Winter Newsletter describe how it was the dearest wish of the family of Mrs Doris Stinson, a well-loved mother and grandmother, that she be remembered with a gift of books for children with fragile X.
In order to make best use of this wonderful donation in memory of Mrs. Stinson, six books were selected by the Society with the help of some of our parents, who were all very willing to share their experiences of reading with and to their children. The key criteria for selection were that the chosen titles should appeal to fragile X children across the whole age range and that there should be choice enough for both boys and girls.
1. Dear Zoo – a board book
2. Hungry Caterpillar – a board book
3. Peace at Last
4. Whatever Next?
5. The Gruffalo
6. The Three Little Pigs – a Ladybird Read it Yourself book
If you would like to receive a book then all you need to do is to Contact Us with your request. We are offering ONE BOOK per family. The Society shall operate this offer until the books have all been given away.
On behalf of all our families we would like to thank Jill Geddes and her family for offering this very worthwhile and beneficial service to our members.
join us on Facebook 
follow us on twitter
Share your news, views, and reviews with other members in the Society's Secure Members Only Forum : If you are a member of the Society and:
- Have already registered with us, you can access the Members' Only Forum
- If you have not registered, then you can do so by emailing us
- Not a member? Then why not join? (Please note : Qualification rules apply)
The 2011 European Fragile X Awareness Day was on 18 November. For 2012 it will be on Wednesday 10th October.
Our long term aim is to make the annual Fragile X Awareness Day a "brand" which is readily recognised in Europe so that awareness of the condition becomes widespread amongst its peoples.
Closer to the time we expect to prepare an "informational" which gives the relevant information about fragile X, for use by anyone who wishes to raise awareness of the condition.
Furthermore, our fragile X leaflets will be available widely, and we hope that these find their way to people who know little or nothing about fragile X, and spur them onto finding out even more by vising our website.This can only be a good thing; since awarenes must bring with it increased understanding and special care.
Additionally we shall of course use our Facebook presence and twitter, hoping that people will re-tweet and so widen the net of message receivers.
Here is a brief message from Tim Potter, the Managing Director of The Fragile X Society:
European Fragile X Awareness Day
Wednesday 10th October 2012
Fragile X is the most common form of inherited learning disabilities. It is estimated to impact at least 1 in 4000 males and 1 in 6000 females.
Very often it remains undiagnosed, or misdiagnosed as autism, and is misunderstood by many professionals. Fragile X is the most common identifiable cause of autistic spectrum conditions worldwide.
October 10th 2012 is Fragile X Awareness Day when families living with Fragile X will be seeking to raise awareness of the condition. This is an Awareness Day across Europe with 16 countries involved.
For more details please contact Tim Potter, Managing Director, The Fragile X Society, 01371 875100.
Tim Potter
Managing Director and Fund Raiser
Grant awareded to The Fragile X Society
April 2012: The Fragile X Society is celebrating after receiving a grant from Genetic Disorders UK, the national charity that organises Jeans for Genes Day. This donation will be used to fund our new booklet, “Fragile X Syndrome: An Introductory Guide to The Educational Needs and How They can be Met”.
This year Jeans for Genes Day will be held on Friday 5th October.
What's else is New?
The rest of this page gives further details about the 'What's New?' items listed above.
Media News
X syndrome: 'It took 17 months to get his diagnosis'
November 2010 - Scotland On Sunday
"REEM Waines said she and her husband had never heard of FXS before Kenz was diagnosed three years ago." ...... Read the remainder of this article here.
Family donation to Genetic Research
Selkirk Weekend Advertiser - November 2010
"A family has pledged a six-figure sum to a new research centre into a little-known genetic condition affecting their son"...... The full article in the Selkirk Weekend Advertiser can be found here.
The same story is also covered in this video clip "Family donates six-figure sum to learning difficulties research".
We have to stay ten steps ahead of Kieran
Excerpts from an article by Catherine Salmond, Edinburgh Evening News, 19 February 2010
"THIS is Mummy," six-year-old Kieran Dewar says, clutching his mum Nerina by the waist momentarily, before pointing at her stomach. "And this is her tummy."
The lively youngster then bounces off to the family sitting room to watch a television programme. Nerina watches him go, shaking her head with a smile: "He's got quite a thing about tummies at the moment," she says.
This is how this article starts, and readers then get moving descriptions of the ways in which Kieran affects the daily lives of his parents Stuart and Narina Dewar.
Please click the link below to read the whole article....
http://edinburghnews.scotsman.com/features/We--have-to-stay.6088090.jp
Research news
Research hub to tackle rare genetic illness - Meeting Date confirmed
December 2010
GREAT NEWS : The date for a meeting for families affected by fragile X at the newly opened Patrick Wild Centre for Research into Fragile X Syndrome (see press items below) at The University of Edinburgh, has been confirmed to be January 19th 2011. The objective is for the Centre to engage with individuals and thier families affected by fragile X, as they believe that this is key to them being able to be a successful research facility.
The Fragile X Society is linked to this centre and would encourage all those who are able to, to attend this event. The meeting will commence at 2.30pm in Room G.07A of the Informatics Forum, 10 Crichton Street, Edinburgh, EH8 9AB, U.K. Please note that if you wish to participate it is not simply a case of turning up on the day: to attend, you must notify the Centre (not The Fragile X Society) as detailed in this file from the Centre.
November 2010 - Scotland on Sunday.
By Lyndsay Moss, Health Correspondent
"A RESEARCH centre aimed at finding new treatments for a distressing genetic mutation with strong links to autism is to open in Scotland this week following a determined fund-raising campaign." The full deatils can be found here.
***
The same story is also covered in this video clip "Family donates six-figure sum to learning difficulties research".
Brain clue may explain condition's 'hug avoidance'
Febuary 2010 - Wide coverage
This has been covered by a number of news articles, most notably, by BBC News, The Daily Mail, and many other productions worldwide.
*************************************************************************************
*************************************************************************************
See also the Research News and News Room pages for more news items related to fragile X.
*************************************************************************************
News about the next Newsletters
The Society's newsletter, containing the latest information we have about all matters to do with fragile X (including 'Family Stories' penned by our ever-indulgent family members) and details of any forthcoming confereces, is produced every 2 months and distributed free of charge to our family, professional, and overseas members.
We hope you like the new format; we have listened to your feedback and have hopefully successfully made some improvements.
Society News
Chelmsford Family Support Group Meetings
The family support group meeting for parents and carers of children and adults with fragile X are normally held on the first Monday of every month, in Chelmsford, Essex, at
Chelmsford Voluntary Services
First Floor, 47 Broomfield Road, Chelmsford, Essex, CM1 1SY
Unfortunately the event can be attended by adults only, as the venue is not suitable for children. If you would like to, and are able to attend, we will be pleased to welcome you. Please Contact Us for more details.
If you are interested in setting up a support group in your area then please contact Wendy Bowler on 01371 875100, or at wendy@fragilex.org.uk
Fragile X Merchandise
We are pleased to offer items for sale which help our families to raise awareness of fragile X, as we are certain that a greater awreness of fragile X amongst the general public would make life easier for our families. Furthermore, items such as the Fragile X Polo Shirt, Fragile X Awareness Cards, and our Christmas cards are also useful when undertaking fundraising activities for the Society; as these help to keep our funds going so that we can contine to support our families.
Free Books - Gift books for members who have children with fragile X
As those of you who receive our newsletters will remember , an article from our Winter Newsletter describe how it was the dearest wish of the family of Mrs Doris Stinson, a well-loved mother and grandmother, that she be remembered with a gift of books for children with fragile X.
In order to make best use of this wonderful donation in memory of Mrs. Stinson, six books were selected by the Society with the help of some of our parents, who were all very willing to share their experiences of reading with and to their children. The key criteria for selection were that the chosen titles should appeal to fragile X children across the whole age range and that there should be choice enough for both boys and girls.
1. Dear Zoo – a board book
2. Hungry Caterpillar – a board book
3. Peace at Last
4. Whatever Next?
5. The Gruffalo
6. The Three Little Pigs – a Ladybird Read it Yourself book
If you would like to receive a book then all you need to do is to Contact Us with your request. We are offering ONE BOOK per family. The Society shall operate this offer until the books have all been given away.
On behalf of all our families we would like to thank Jill Geddes and her family for offering this very worthwhile and beneficial service to our members.
join us on Facebook follow us on twitter
Share your news, views, and reviews with other members in the Society's Secure Members Only Forum : If you are a member of the Society and:
- Have already registered with us, you can access the Members' Only Forum
- If you have not registered, then you can do so by emailing us
- Not a member? Then why not join? (Please note : Qualification rules apply)