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The Fragile X Society Family Conference and AGM September 2014

Our very popular (very informative, and very sociable) annual conference and AGM will be held on Saturday September 27th 2014 at the usual venue, The Holiday Inn at Birmingham.

The full programme, speaker biographies and booking forms for families, professionals, and the children's creche can be found onpages 14 to 18 of our newsletter 75 (the June - July 2014 edition). If you would like to come then you will be most welcome - please print the booking forms, complete as appropriate, and send them ono the office at the address given on the form. Many thanks! and we look forward to seeing you there.

New on-line course aimed at Professionals

We are so please that an e-learning course aimed at raising awareness of the little-known condition Fragile X Syndrome among professionals has been launched within the UK. 

The online tool has been developed by the Fragile X Society in conjunction with social care charity Cornerstone and is designed to help professionals to better support individuals and families affected by the condition.

The e-course was developed following the appointment just over a year ago of a Scottish Family Support Worker, Scotland’s first dedicated support worker for families affected by Fragile X Syndrome. This post was created in November 2012, following the announcement of a £25,000 award by Michael Matheson, Scottish Minister for Public Health, as part of the Scottish Strategy for Autism: Autism Development Fund for 2012-13. 

The design of this new course has taken several months, and has been done very much in conjunction with Cornerstone’s Learning and Development team. 

The aim is that it will become an invaluable tool for professionals working with people with learning difficulties, and its objectives are - to provide information about Fragile X Syndrome to the relevant professionals, to give them the ability to recognise its characteristics, and to help Identify ways to support individuals with the syndrome.

For further information or to purchase the course please contact Sandra Thoms, Family Support Worker, Scotland on 07825050072 or by email at sandra@fragilex.org.uk

Genetic Alliance UK Project

Genetic Alliance UK is looking for patients affected by genetic conditions and their families to take part in their new project, 'My Condition, My DNA'.  Can you help?

Thanks to a new method of genomic sequencing it is becoming faster and cheaper to sequence large amounts of genetic information.  At the same time, researchers are finding out more about how our genes can affect our health, and how we can use this information to improve healthcare through better diagnosis and treatment.

But, how do patients and their families feel about the use of genomic sequencing in the NHS?

To answer this question, Genetic Alliance UK would like to invite you to participate in a series of engagement sessions that will explore the societal, ethical and practical issues raised by using genomic sequencing to collect large amounts of genetic information.  The findings of this research will be fed straight back to those making decisions about how genomic sequencing could be used by the NHS in the future in the form of a 'Patient and Family Charter'.

If you think you would like to be involved in this study, then please click on this link  for more information.  If you wish to take part then please print and then complete the PARTICIPATION REGISTRATION FORM and return it to Alice Hazelton at 

Genetic Alliance UK, Unit 4D Leroy House, 436 Essex Road, London. N1 3QP.

If you have any questions about the study then please feel free to contact Alice at alice@geneticalliance.org.uk

Thank You. Sally Hicks, Research Officer, The Fragile X Society 

The Fragile X Society Newsletter no 75:

June - July 2014 

The next Society Newsletter (number 75)  is now available. It is full of all manner of topics and news items that will be of interest to our fragile X families and friends, in particular: 

  • Family Stories/Achievements/Profiles/Networks/Support Groups 
  • Fundraising News - So many of our families, friends and  colleagues take on all manner of activities and challenges to fundraise for us that this newsletter is (mainly) dedicated to them: to acknowledge and thank them for their loyalty and hard work - and also to encourage them, something which I am sure you will agree we all need.... and .....we should like to alert you to the forthcoming Fragile X Charity Dinner on Fragile X Awareness Day on Friday 10th October 2014; wouldn't you like to go and have a great evening???
  • March 2014 London Conference Report : "Current Research and the thinking behind the research approaches", a talk given by Dr Mark Hurst and very well received by the delegates
  • Family Support News, including details of future "Shared Carer Information Sessions" and Support Group Meetings news and dates
  • September 2014 Birmingham  Family Conference and AGM - Full Programme, Speaker Biographies, and Family and Associate and Creche Registration Forms
  • Research Updates, including the results of the "Novartis AFQ056 Randomised Controlled Trials",  and news of the "Fragile X International Caregiver Burden "Online" Survey" and of "Talking to children about inherited genetic conditions" 

The newsletter is FREE. A PDF format copy can be obtained by clicking on the picture below. Please note that our newsletters are usually between 28 and 32 pages long and may therefore take a while to download.

  

If you would like a paper copy of the newsletter then I shall be pleased to send one to you - please get in touch with me by email (sumati@fragilex.org.uk) or by phone (01371  875100).   

We welcome feedback about newsletter contents from our readers.

Please feel free to contact me with your comments by email (sumati@fragilex.org.uk),

or by phone (01371 8751000).

Sumati Saxton, Newsletter Editor, The Fragile X Society

email: sumati@fragilex.org.uk

Tel: 01371 875100

DISCLAIMER:

Please note that the views expressed in our Family Stories or Member quotes are those held by the author and do not necessarily represent those of The Fragile X Society.

We have taken care 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. 

The Fragile X Society Newsletter no 76:

August - September 2014 

The next Society Newsletter (number 76)  is now available. It is full of all manner of topics and news items that will be of interest to our fragile X families and friends, in particular:  

  • Family Stories/Achievements/Profiles/Networks/Support Groups 
  • Fundraising News - including information about the marathon runs that have been organised country-wide that you may wish to participate in
  • Christmas Cards 2014 with an order form
  • Annual Lottery Draw details and prizes
  • Family Support News from each of our Family Support Workers Wandy, Jane, and Sandra
  • Research Updates, of the research studies the Society is currently involved with

The newsletter is FREE. A PDF format copy can be obtained by clicking on the picture below. Please note that our newsletters are usually between 28 and 32 pages long and may therefore take a while to download.

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

Film Mission to Lars   

 

May 2013: Kate Spicer: Meeting Lars Ulrich helped my brother live a more independent life.

The full low-down on the experience of  Kate Spicer and her brothers  that led to them making this trip-of-a-lifetime is given in this METRO article -  http://metro.co.uk/2013/05/08/kate-spicer-meeting-lars-ulrich-helped-my-fragile-x-brother-live-a-more-independent-life-3715060/

More information about this film

Please note that all the following information below has been taken from the MenCap website www.mencap.org.uk.

A film about brothers and sisters - In the film Mission to Lars we meet Tom Spicer who has Fragile X syndrome, and who has a dream to meet his hero - Lars Ulrich - the drummer with heavy metal Metallica. He had asked for years. Finally his siblings realised they needed to offer him the help he needed to fulfill his wish.

The critically acclaimed feature documentary, Mission to Lars, is the funny and moving story of these two hapless siblings' attempts to make their brother's dream come true. The film is directed by Will Spicer, Tom's brother. Their sister Kate Spicer is in the film alongside Tom and raised the money to get the film made.

Mission to Lars is a heart-warming insight into family relationships and learning disability, which explores the role - good, bad and comical - that siblings play in each other’s lives.

Mission to Lars on DVD

Mission to Lars is available on DVD, Blu-ray and Video on Demand through Clearvision . It is possible to buy a copy on the Amazon website. Proceeds from the DVD and Blu-ray sales will go to Mencap, helping them to support people with a learning disability and their families.

Mission Mencap
Tom wanted to meet his hero, Lars Ulrich. The Spicer family believe that people with a learning disability should be able to live a life without limits; but sometimes people need a bit of help. Mencap will be working with the Spicers to develop Mission Mencap, an initiative that aims to help more people with a learning disability to have more adventures - big and small.


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

 What's else is New?

 The rest of this page gives further details about the 'What's New?' items listed above.

  


  

 Research news

See the Research News and News Room pages for news items related to fragile X.

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

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. 

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)

    

 

 

Which item would you like to explore?

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

The Fragile X Society Family Conference and AGM September 2014

Our very popular (very informative, and very sociable) annual conference and AGM will be held on Saturday September 27th 2014 at the usual venue, The Holiday Inn at Birmingham.

The full programme, speaker biographies and booking forms for families, professionals, and the children's creche can be found onpages 14 to 18 of our newsletter 75 (the June - July 2014 edition). If you would like to come then you will be most welcome - please print the booking forms, complete as appropriate, and send them ono the office at the address given on the form. Many thanks! and we look forward to seeing you there.

New on-line course aimed at Professionals

We are so please that an e-learning course aimed at raising awareness of the little-known condition Fragile X Syndrome among professionals has been launched within the UK. 

The online tool has been developed by the Fragile X Society in conjunction with social care charity Cornerstone and is designed to help professionals to better support individuals and families affected by the condition.

The e-course was developed following the appointment just over a year ago of a Scottish Family Support Worker, Scotland’s first dedicated support worker for families affected by Fragile X Syndrome. This post was created in November 2012, following the announcement of a £25,000 award by Michael Matheson, Scottish Minister for Public Health, as part of the Scottish Strategy for Autism: Autism Development Fund for 2012-13. 

The design of this new course has taken several months, and has been done very much in conjunction with Cornerstone’s Learning and Development team. 

The aim is that it will become an invaluable tool for professionals working with people with learning difficulties, and its objectives are - to provide information about Fragile X Syndrome to the relevant professionals, to give them the ability to recognise its characteristics, and to help Identify ways to support individuals with the syndrome.

For further information or to purchase the course please contact Sandra Thoms, Family Support Worker, Scotland on 07825050072 or by email at sandra@fragilex.org.uk

Genetic Alliance UK Project

Genetic Alliance UK is looking for patients affected by genetic conditions and their families to take part in their new project, 'My Condition, My DNA'.  Can you help?

Thanks to a new method of genomic sequencing it is becoming faster and cheaper to sequence large amounts of genetic information.  At the same time, researchers are finding out more about how our genes can affect our health, and how we can use this information to improve healthcare through better diagnosis and treatment.

But, how do patients and their families feel about the use of genomic sequencing in the NHS?

To answer this question, Genetic Alliance UK would like to invite you to participate in a series of engagement sessions that will explore the societal, ethical and practical issues raised by using genomic sequencing to collect large amounts of genetic information.  The findings of this research will be fed straight back to those making decisions about how genomic sequencing could be used by the NHS in the future in the form of a 'Patient and Family Charter'.

If you think you would like to be involved in this study, then please click on this link  for more information.  If you wish to take part then please print and then complete the PARTICIPATION REGISTRATION FORM and return it to Alice Hazelton at 

Genetic Alliance UK, Unit 4D Leroy House, 436 Essex Road, London. N1 3QP.

If you have any questions about the study then please feel free to contact Alice at alice@geneticalliance.org.uk

Thank You. Sally Hicks, Research Officer, The Fragile X Society 

The Fragile X Society Newsletter no 75:

June - July 2014 

The next Society Newsletter (number 75)  is now available. It is full of all manner of topics and news items that will be of interest to our fragile X families and friends, in particular: 

  • Family Stories/Achievements/Profiles/Networks/Support Groups 
  • Fundraising News - So many of our families, friends and  colleagues take on all manner of activities and challenges to fundraise for us that this newsletter is (mainly) dedicated to them: to acknowledge and thank them for their loyalty and hard work - and also to encourage them, something which I am sure you will agree we all need.... and .....we should like to alert you to the forthcoming Fragile X Charity Dinner on Fragile X Awareness Day on Friday 10th October 2014; wouldn't you like to go and have a great evening???
  • March 2014 London Conference Report : "Current Research and the thinking behind the research approaches", a talk given by Dr Mark Hurst and very well received by the delegates
  • Family Support News, including details of future "Shared Carer Information Sessions" and Support Group Meetings news and dates
  • September 2014 Birmingham  Family Conference and AGM - Full Programme, Speaker Biographies, and Family and Associate and Creche Registration Forms
  • Research Updates, including the results of the "Novartis AFQ056 Randomised Controlled Trials",  and news of the "Fragile X International Caregiver Burden "Online" Survey" and of "Talking to children about inherited genetic conditions" 

The newsletter is FREE. A PDF format copy can be obtained by clicking on the picture below. Please note that our newsletters are usually between 28 and 32 pages long and may therefore take a while to download.

  

If you would like a paper copy of the newsletter then I shall be pleased to send one to you - please get in touch with me by email (sumati@fragilex.org.uk) or by phone (01371  875100).   

We welcome feedback about newsletter contents from our readers.

Please feel free to contact me with your comments by email (sumati@fragilex.org.uk),

or by phone (01371 8751000).

Sumati Saxton, Newsletter Editor, The Fragile X Society

email: sumati@fragilex.org.uk

Tel: 01371 875100

DISCLAIMER:

Please note that the views expressed in our Family Stories or Member quotes are those held by the author and do not necessarily represent those of The Fragile X Society.

We have taken care 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. 

The Fragile X Society Newsletter no 76:

August - September 2014 

The next Society Newsletter (number 76)  is now available. It is full of all manner of topics and news items that will be of interest to our fragile X families and friends, in particular:  

  • Family Stories/Achievements/Profiles/Networks/Support Groups 
  • Fundraising News - including information about the marathon runs that have been organised country-wide that you may wish to participate in
  • Christmas Cards 2014 with an order form
  • Annual Lottery Draw details and prizes
  • Family Support News from each of our Family Support Workers Wandy, Jane, and Sandra
  • Research Updates, of the research studies the Society is currently involved with

The newsletter is FREE. A PDF format copy can be obtained by clicking on the picture below. Please note that our newsletters are usually between 28 and 32 pages long and may therefore take a while to download.

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

Film Mission to Lars   

 

May 2013: Kate Spicer: Meeting Lars Ulrich helped my brother live a more independent life.

The full low-down on the experience of  Kate Spicer and her brothers  that led to them making this trip-of-a-lifetime is given in this METRO article -  http://metro.co.uk/2013/05/08/kate-spicer-meeting-lars-ulrich-helped-my-fragile-x-brother-live-a-more-independent-life-3715060/

More information about this film

Please note that all the following information below has been taken from the MenCap website www.mencap.org.uk.

A film about brothers and sisters - In the film Mission to Lars we meet Tom Spicer who has Fragile X syndrome, and who has a dream to meet his hero - Lars Ulrich - the drummer with heavy metal Metallica. He had asked for years. Finally his siblings realised they needed to offer him the help he needed to fulfill his wish.

The critically acclaimed feature documentary, Mission to Lars, is the funny and moving story of these two hapless siblings' attempts to make their brother's dream come true. The film is directed by Will Spicer, Tom's brother. Their sister Kate Spicer is in the film alongside Tom and raised the money to get the film made.

Mission to Lars is a heart-warming insight into family relationships and learning disability, which explores the role - good, bad and comical - that siblings play in each other’s lives.

Mission to Lars on DVD

Mission to Lars is available on DVD, Blu-ray and Video on Demand through Clearvision . It is possible to buy a copy on the Amazon website. Proceeds from the DVD and Blu-ray sales will go to Mencap, helping them to support people with a learning disability and their families.

Mission Mencap
Tom wanted to meet his hero, Lars Ulrich. The Spicer family believe that people with a learning disability should be able to live a life without limits; but sometimes people need a bit of help. Mencap will be working with the Spicers to develop Mission Mencap, an initiative that aims to help more people with a learning disability to have more adventures - big and small.


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

 What's else is New?

 The rest of this page gives further details about the 'What's New?' items listed above.

  


  

 Research news

See the Research News and News Room pages for news items related to fragile X.

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

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. 

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)

    

 

 

 

 

 

 

 

 

 

 

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.