What's New?
The rest of this page gives further details about the 'What's New?' items listed above.
Media News
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
Famous football star Lionel Messi raises awareness of fragile X
What Lionel Messi's T-Shirt At The Bernabeu Meant
Excerpts from an article by Ewan Macdonald, (Goal.com), on 3-May-2009 1:39:09 AM
When Lionel Messi netted for Barcelona during their historic 6-2 win at the Santiago Bernabeu over Real Madrid, he lifted his shirt to reveal a message to the fans on a t-shirt.
However, the logo was displayed so briefly that it was difficult for the worldwide audience to catch.
But by looking at a photograph of the moment, we see what Messi was trying to tell the world:.......(photo follows) .......
The t-shirt reads 'Sindrome X Fragil', which is the name of a medical condition known in English as Fragile X Syndrome.
For the full story complete with the photo, please see article by Ewan at
http://www.goal.com/en-india/news/2175/la-liga/2009/05/03/1243073/what-lione
....... OR simply type in 'messi fragile x' to your favourite search engine to read up on all the news items that cover Messi's marvellous gesture to raise awareness of fragile X,
Thank you Messi, we're with you all the way.
Research news
Febuary 2010 - Wide coverage
Brain clue may explain condition's 'hug avoidance'
This has been covered by a number of news articles, most notably, by BBC News, The Daily Mail, and many other productions worldwide.
News bulletin from FRAXA - Sept 18 2009
Today's Bloomberg news: a Eureka moment for Fragile X
In 2007, FRAXA medical director Dr. Mike Tranfaglia missed Thanksgiving dinner to present the key advances in Fragile X research to Roche scientists in Basel, Switzerland. It was well worth it, as Bloomberg news reported today: Roche kicked off a Fragile X research program and is poised to begin clinical trials this year.
Mike met with Dr. Luca Santarelli, Roche's head of central nervous system exploratory development, who said, in an interview with Bloomberg reporter, Dermot Doherty, "For a scientist, a Eureka moment is why we live and do this job. You have very few, but that was one of them." Read the Bloomberg article here.
*************************************************************************************
New Drug Shows Promise for Treatment for Adults with Fragile X Syndrome - HealthNewsDigest, Jan 6 2009
*************************************************************************************
See also the Research News and News Room pages for more news items related to fragile X.
*************************************************************************************
Requests for help with research by other organisations
The M.I.N.D. Instutue wish to recruit participants for thier 'Study Focused on Men with the Fragile X Premutation'.
They are searching for men with the fragile X premutation between the ages of 18 and 45 to participate in research examining the effect of genes and brain function on cognition and emotion. When available, they may also invite brothers of these men to participate. For men who have not yet been tested, FMR1 DNA testing is completed to help determine eligibility for the study.
More details can be found on the attached MIND Study Information page.
Fundraising events
Saturday 26th June 2010
Liz Henderson, a Director of the Society and her team of serious cyclists intend to ride from Blairhall to St Andrews! Don't let this staggering distance of 100 miles put you off from taking part though, as not everyone needs to cover the whole distance......and there is a barbeque afterwards when everyone can recover with a beer or two!
If you would like to take part or would like to sponsor Liz or one of her team then do please contact her at lizhenderson348@btinternet.com
Marathon Runner EXTRAORDINAIRE!
8 Marathons in 12 Months (Challenge 2010)
When Anthony Clark's nephew and godson was diagnosed with fragile X in February 2009 Anthony wanted to do something to show his support --- and decided that he would set himself the challenge of completing 123.4 miles in 6 months in competitve races to raise awareness of fragile X and to raise funds for the Society.......
That was last year - Anthony's magnificant efforts were very well rewarded, and now for 2010! See below what Anthony has in mind next :
This challenge has 2 goals. Firstly, to raise money and awareness of Fragile X and The Fragile X Society and also for me to improve my marathon performance and time.
Completing Marathon de Paris 2009 in less than 3 hours, entitles me to a 'good for age' place and automatic entry to all official marathons including the Virgin London Marathon & Real-Berlin Marathon.
My Challenge 2010 'target time' for 26.2 miles is sub 02:50:00. This will be working towards a future time of sub 02:45:00, the time required for the ultimate Championship entry place.
Included in this challenge I am taking place in Votwo's signature endurance running event the Jurassic Coast Challenge along the Dorset coast path. A 26.2 mile marathon each day for 3 days running, jogging, walking or crawling from Lyme Regis to Poole along beautiful but brutal coastal terrain. Heed the warning: The cowardly won't start and the weak won't finish.
Please support Anthony, very little will do, but we should all be very greatful if you can do a lot! Lots more information can be found on his website at http://www.fragilerunner.com/
The Pampered Chef - Cooking Show Fundraiser
Venue: The Blackwell Health Community Centre, The Straight Bit, Flackwell Heath
On: Friday 16th October 2009 , from 11:30 am to 1:30pm
Katherine Watts and Emma Sherwood have organised a fundraising event where you will see a cookery demonstration and have the opportunity to buy some wonderful kitchen products that will save you time and make your life easier in the kitchen!
Thank you very much Katherine and Emma - we hope you and your friends have a great day.
A new social dance company in Lincoln launch and fundraiser 21st March 2009
Lincoln University graduate BeckyJones and Bishop Grosseteste University College student Leo Spowage very successfully launched their social dance company ‘DanceFX’ on Saturday 21st March at Sturton By Stow Village Hall with a Charity Fun Dance, and raised £286.00 for the Society - Thank you Becky and Leo and all good wishes for your future success.
The Flora London Marathon 26th April 2009
We are absolutely deligted with Joanne Massey and Susan Whitehouse, who, in their first ever marathon, raised the ENORMOUS sum of £1479.00 (and this before we claim the Gift Aid from their sponsors). What an achievement, specially since Susan run was running with an injury.
Joanne and Susan - we take our hats off to you - as you noted, running the marathon is one thing, collecting the money is another task in itself......
A huge 'thank you' from all our family members , it is through the sterling efforts of Society friends like yourselves that we are able to continue our support and research activities which benefit our families.
Edinburgh Marathon 31st May 2009
Gareth Jones ran the Edinburgh Marathon on 31st May which, in his own words, 'is twice as long as a half marathon. Which is therefore twice as long as I've ever run to date! Yes this is certainly the biggest physical challenge of my life, but hopefully with your help and sponsorship very much worth it.'
Gareth gives a great account of his son Evan who has fragile X, with an appeal for sponsorship on his fundraising page at http://www.justgiving.com/garethjones_frx . Please support him if you can.
The 4th Fragile X 100 Mile Bike Ride 20th June 2009
Liz Henderson and her fellow fundraisers rode their bikes from St Andrews to Blairhall (100 mile round trip) on June 20th ..... followed with a BBQ and a beer or two afterwards.
She would love it if you would consider sponsoring her? You can read the Henderson family's moving story and sponsor them if you wish on their fundraising page at www.justgiving.com/stuhenderson
Motorcycle expedition from the top to the bottom of the Americas
You can follow the amazing trip made by Simon Siggs to raise awareness of fragile X, and money for the Society, at his site www.fragilexpedition.blogspot.com.
Simon has now returned to England, and is taking a well-earned rest, though stiil busy colloectiong his sponsorship money..... well done Simon, and thank you so very much.
News about the next Newsletters
The February 2010 copy of our Family Newsletter has now been sent to all our family members, so enjoy - we hope you like the new format; we have listened to your feedback from our last one 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
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 
Meet the fragile x community!
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)
What's New?
The rest of this page gives further details about the 'What's New?' items listed above.
Media News
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
Famous football star Lionel Messi raises awareness of fragile X
What Lionel Messi's T-Shirt At The Bernabeu Meant
Excerpts from an article by Ewan Macdonald, (Goal.com), on 3-May-2009 1:39:09 AM
When Lionel Messi netted for Barcelona during their historic 6-2 win at the Santiago Bernabeu over Real Madrid, he lifted his shirt to reveal a message to the fans on a t-shirt.
However, the logo was displayed so briefly that it was difficult for the worldwide audience to catch.
But by looking at a photograph of the moment, we see what Messi was trying to tell the world:.......(photo follows) .......
The t-shirt reads 'Sindrome X Fragil', which is the name of a medical condition known in English as Fragile X Syndrome.
For the full story complete with the photo, please see article by Ewan at
http://www.goal.com/en-india/news/2175/la-liga/2009/05/03/1243073/what-lione
....... OR simply type in 'messi fragile x' to your favourite search engine to read up on all the news items that cover Messi's marvellous gesture to raise awareness of fragile X,
Thank you Messi, we're with you all the way.
Research news
Febuary 2010 - Wide coverage
Brain clue may explain condition's 'hug avoidance'
This has been covered by a number of news articles, most notably, by BBC News, The Daily Mail, and many other productions worldwide.
News bulletin from FRAXA - Sept 18 2009
Today's Bloomberg news: a Eureka moment for Fragile X
In 2007, FRAXA medical director Dr. Mike Tranfaglia missed Thanksgiving dinner to present the key advances in Fragile X research to Roche scientists in Basel, Switzerland. It was well worth it, as Bloomberg news reported today: Roche kicked off a Fragile X research program and is poised to begin clinical trials this year.
Mike met with Dr. Luca Santarelli, Roche's head of central nervous system exploratory development, who said, in an interview with Bloomberg reporter, Dermot Doherty, "For a scientist, a Eureka moment is why we live and do this job. You have very few, but that was one of them." Read the Bloomberg article here.
*************************************************************************************
New Drug Shows Promise for Treatment for Adults with Fragile X Syndrome - HealthNewsDigest, Jan 6 2009
*************************************************************************************
See also the Research News and News Room pages for more news items related to fragile X.
*************************************************************************************
Requests for help with research by other organisations
The M.I.N.D. Instutue wish to recruit participants for thier 'Study Focused on Men with the Fragile X Premutation'.
They are searching for men with the fragile X premutation between the ages of 18 and 45 to participate in research examining the effect of genes and brain function on cognition and emotion. When available, they may also invite brothers of these men to participate. For men who have not yet been tested, FMR1 DNA testing is completed to help determine eligibility for the study.
More details can be found on the attached MIND Study Information page.
Fundraising events
Saturday 26th June 2010
Liz Henderson, a Director of the Society and her team of serious cyclists intend to ride from Blairhall to St Andrews! Don't let this staggering distance of 100 miles put you off from taking part though, as not everyone needs to cover the whole distance......and there is a barbeque afterwards when everyone can recover with a beer or two!
If you would like to take part or would like to sponsor Liz or one of her team then do please contact her at lizhenderson348@btinternet.com
Marathon Runner EXTRAORDINAIRE!
8 Marathons in 12 Months (Challenge 2010)
When Anthony Clark's nephew and godson was diagnosed with fragile X in February 2009 Anthony wanted to do something to show his support --- and decided that he would set himself the challenge of completing 123.4 miles in 6 months in competitve races to raise awareness of fragile X and to raise funds for the Society.......
That was last year - Anthony's magnificant efforts were very well rewarded, and now for 2010! See below what Anthony has in mind next :
This challenge has 2 goals. Firstly, to raise money and awareness of Fragile X and The Fragile X Society and also for me to improve my marathon performance and time.
Completing Marathon de Paris 2009 in less than 3 hours, entitles me to a 'good for age' place and automatic entry to all official marathons including the Virgin London Marathon & Real-Berlin Marathon.
My Challenge 2010 'target time' for 26.2 miles is sub 02:50:00. This will be working towards a future time of sub 02:45:00, the time required for the ultimate Championship entry place.
Included in this challenge I am taking place in Votwo's signature endurance running event the Jurassic Coast Challenge along the Dorset coast path. A 26.2 mile marathon each day for 3 days running, jogging, walking or crawling from Lyme Regis to Poole along beautiful but brutal coastal terrain. Heed the warning: The cowardly won't start and the weak won't finish.
Please support Anthony, very little will do, but we should all be very greatful if you can do a lot! Lots more information can be found on his website at http://www.fragilerunner.com/
The Pampered Chef - Cooking Show Fundraiser
Venue: The Blackwell Health Community Centre, The Straight Bit, Flackwell Heath
On: Friday 16th October 2009 , from 11:30 am to 1:30pm
Katherine Watts and Emma Sherwood have organised a fundraising event where you will see a cookery demonstration and have the opportunity to buy some wonderful kitchen products that will save you time and make your life easier in the kitchen!
Thank you very much Katherine and Emma - we hope you and your friends have a great day.
A new social dance company in Lincoln launch and fundraiser 21st March 2009
Lincoln University graduate BeckyJones and Bishop Grosseteste University College student Leo Spowage very successfully launched their social dance company ‘DanceFX’ on Saturday 21st March at Sturton By Stow Village Hall with a Charity Fun Dance, and raised £286.00 for the Society - Thank you Becky and Leo and all good wishes for your future success.
The Flora London Marathon 26th April 2009
We are absolutely deligted with Joanne Massey and Susan Whitehouse, who, in their first ever marathon, raised the ENORMOUS sum of £1479.00 (and this before we claim the Gift Aid from their sponsors). What an achievement, specially since Susan run was running with an injury.
Joanne and Susan - we take our hats off to you - as you noted, running the marathon is one thing, collecting the money is another task in itself......
A huge 'thank you' from all our family members , it is through the sterling efforts of Society friends like yourselves that we are able to continue our support and research activities which benefit our families.
Edinburgh Marathon 31st May 2009
Gareth Jones ran the Edinburgh Marathon on 31st May which, in his own words, 'is twice as long as a half marathon. Which is therefore twice as long as I've ever run to date! Yes this is certainly the biggest physical challenge of my life, but hopefully with your help and sponsorship very much worth it.'
Gareth gives a great account of his son Evan who has fragile X, with an appeal for sponsorship on his fundraising page at http://www.justgiving.com/garethjones_frx . Please support him if you can.
The 4th Fragile X 100 Mile Bike Ride 20th June 2009
Liz Henderson and her fellow fundraisers rode their bikes from St Andrews to Blairhall (100 mile round trip) on June 20th ..... followed with a BBQ and a beer or two afterwards.
She would love it if you would consider sponsoring her? You can read the Henderson family's moving story and sponsor them if you wish on their fundraising page at www.justgiving.com/stuhenderson
Motorcycle expedition from the top to the bottom of the Americas
You can follow the amazing trip made by Simon Siggs to raise awareness of fragile X, and money for the Society, at his site www.fragilexpedition.blogspot.com.
Simon has now returned to England, and is taking a well-earned rest, though stiil busy colloectiong his sponsorship money..... well done Simon, and thank you so very much.
News about the next Newsletters
The February 2010 copy of our Family Newsletter has now been sent to all our family members, so enjoy - we hope you like the new format; we have listened to your feedback from our last one 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
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 Meet the fragile x community!
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)