Copyright © 2018 The Fragile X Society

 

Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England

Charity Registration SC047332 - The Fragile X Society Registered Charity in Scotland
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA

 

Fragile X Society Newsletters

Member email newsletters 

We send regular email newsletters to our members. These newsletters include personal stories about Fragile X, useful information, the latest research news and updates about our events. You can sign up for free as a member of our charity quickly and easily, here in order to be kept up to date with all the latest Fragile X news! 

Supporter mailing list

These less frequent emails are for those who would like to be kept up to date with information about our charity, the impact of our work and ways that you can get involved or support us. These emails are sent to all of our members (in addition to the email newsletter), as well as those donors who sign up to receive our communications, via sites like JustGiving. 

Print newsletter archive

You can also find an archive of our old booklet-style newsletters below. 

 

 

Christmas 2018 Issue

 

Inspiring fundraising stories, research updates and lovely family stories! 

August 2018 Issue

 

Some great family stories, as well as the launch of some exciting new fundraising and awareness campaigns! 

June 2018 Issue

 

Hear the stories of our amazing London Marathon Runners as well as some fantastic other family stories in this issue. As always, the newsletter also includes lots of helpful updates and news about research. 

February 2018 Issue

 

In this issue we have an article on the importance of play from Tracy and Mouse; two great family stories written by Kerry and Clare, featuring a wonderful dance teacher and some BabyBel models!  There are some important dates for your diary;  news on education in England and Wales; updates on benefits in Scotland; alongside all the usual research and charity updates. 

November 2017 Issue

 

In this issue we have a fantastic family story written by Isabella and Roscoe, about their brother Percy called "My Brother and Me". In addition, you can hear about Charlie's mission to raise awareness of FRAXE, via his new documentary. We provide some top tips for managing the busy Christmas season, alongside all the usual research and charity updates. 

May 2017 Issue

 

Learn about our up-coming family conference! In addition, we share some top tips for teachers, based on the learning profile of Fragile X Syndrome. As usual, the issue is also packed with family stories, research updates and charity news. 

 

August 2017 Issue

 

In this issue we launch our 2017 Fragile X awarneness campaign! Furthermore, we provide details of a new clinic for Fragile X carriers in Liverpool. Alongside this, you can access the latest news from our charity, research updates and read family stories. 

February 2017 Issue

 

This issue is packed to the brim with family stories, with contributions from Vicki Danks on her experiences of son Rohan's Fragile X diagnosis, as well as a touching tribute to Kathryn Silk's late brother, Howard.  

 

There are also updates on opportunities to participate in the latest Fragile X research, as well as summaries of the most recent scientific studies into gene editing by Mark Hirst, and employment in Fragile X adults by researchers at Kent University. 

 

We hope you enjoy this edition!

 

November 2016 Issue

 

In this issue our CEO and chairman reflect on our Birmingham Conference, and some of our most important achievements this year. 

 

Jo Gale, a long standing member of the Society, also shares a powerful tribute to her late brother, James. Additionally, we have included some of our favourite pictures and stories sent in by families for this years European Fragile X Awareness Day, and an update on the success of #fragileXpedition! 

 

Our CEO also gives a summary on the latest in understanding the Fragile X premutation. We hope you enjoy this edition!

 

May 2016 Issue

 

In this issue our chairman talks about the importance of family fundraising, and how his family and local community embarked on a charity spin-a-thon challenge!

 

We also look at the current research surrounding FXTAS - a carrier related neurological condition which can have an affect later in life, for both men and women. Additionally, we share details of the first FXTAS clinic recently opened in the UK. 

 

With plenty of family stories, fundraising updates, and charity news, this edition is not one to be missed! 

 

February 2016 Issue

 

In this issue we introduce our new chairman Craig McDonald, who shares his passion and view for the future of The Fragile X Society. 

 

We also share some of our latest #fragileXtraordinary family stories submitted by our wonderful members, including John Peacock's, sent in by his sister Lorraine. 

 

Additionally, Becky (our CEO) has produced an article on hyper-arousal in Fragile X Syndrome based on a talk by researcher Jane Roberts. Finally, we thank Downsend School in Surrey, for choosing us as their Charity of the Year, as a result of student Josie's efforts. 

 

Happy reading!

25th Anniversary Newsletter

 

 

This is a special edition of the newsletter because 2015 marks the 25th Anniversary of the charity! In this issue we look back over the 25 years and celebrate how far our understanding of Fragile X has come, the changes in the Fragile X Society and hear about different families' journey with fragile X over the past 25 years.

 

You can also read more about our exciting plans for Eurpoean Fragile X Awareness Day 2015 (10th October!) and details of up-coming events, as well as all of our regular updates.

 

Our Support Worker article in this edition gives 10 useful tips to help with transition into adulthood.   

November 2015 Issue

 

We are delighted to share our new syle newsletter with you! 

 

In this issue we thank our chairman Steve Harris as he steps down after 7 years leading the charity. We also report on the exciting activities from European Fragile X Awareness Day.

 

Additionally, our Scottish support worker Sandra gives us an update on Chloe's business venture. Finally, Dr. Stacey Clough (specialist registrar in special care dentistry) gives some tips on oral health care for individuals with Fragile X. 

 

We hope you enjoy the issue. 

Apr - May 2015

We have the following stories for you in this newsletter:

 

Report from Becky, the Society’s CEO

 

Research Update of new and ongoing studies that we are involved with

 

Family Stories

  • Sarah Beal : My Fragile X Experiences

  • A Family Story : PGD (Pre-implantation Genetic Diagnosis)

 

Family Support

  • Benefits and Financial help

  • The Children and Families’ Act and Education, Health and Care Plans

  • Short Breaks

  • Universal Credit Update

 

Rare Disease Day : Craig McDonald gives Fragile X talk at the Scottish Parliament

 

100+ Club News

Fundraising News

Fundraising Idea : The Peak District Challenge

 

In Memoriam

 

Feb - Mar 2015

We've got the following stories for you in this newsletter:

 

News from  Becky, our CEO

 

Programme for The Scottish Conference in May 2015 (with the Registration Documents)

 

Family Stories

  • Christina’s happy outlook on life , DESPITE everything

  • A heartfelt “Thank You” for our help and support

  • Emily Clarke’s Awareness and Fund-raising Coffee Morning

 

Conference Reports

  • Genetic Testing and its Implications

  • Wills and Trusts

 

The first part of this article appeared in our previous newsletter (No 78, see below), and this article completes the piece.

 

We offer 2 papers for this complex subject: one for the law as it applies in England, and another for Scotland. The information for England, Wales and Northern Ireland is included in this newsletter, and information for Scotland (“Power of Attorney, Guardianship, Capacity Issues and Wills and Trusts (Scotland)”) is also available - Please contact us if you would like a copy.
 

Family Support News and Updates

  • HOME Farm Trust Holiday Guide

  • Fragile X Awareness Sessions at One Stop Shops in Edinburgh and Ayrshire

 

Research Update

  • Social Cognition in Fragile X Syndrome

 

Fundraising  News and Acknowledgements

  • 100+ Club News

  • Family Fundraising Report

  • Popularity Contest with ASDA’s green counters!

 


Please contact us via this site if you would like a printed copy of this paper, or wish to make any comments about this or past or future newsletters. Please click here to get in touch.

 

The Fragile X Society Newsletter no 78:

December 2014 - January 2015

We've got the following stories for you in this newsletter:

 

Meet Becky, our new CEO 

 

Family Support News and Updates Articles

  • Tips to manage the exciting time of Christmas for our little ones.

  • The Care Act 2014 – About that “Transition” period from children to adult social care.

  • Glasgow Support Group – “A Holistic Evenin”g at the Cornerstone offices.

  • “A Relaxed Performance of Peter Pan” in Glasgow for schools, groups and families with children with an autistic spectrum condition, sensory or communication disorder, or learning disability.

  • “Planning for the Future” - how the law can assist in financial planning for the future. We discuss “Deputyship”, Lasting Power of Attorney, and The Mental Capacity Act 2005.

 

We offer 2 papers for this complex subject: one for the law as it applies in England, and another for Scotland. The information for England, Wales and Northern Ireland is included in this newsletter, and information for Scotland (“Power of Attorney, Guardianship, Capacity Issues and Wills and Trusts (Scotland)”) is also available - Please contact us if you would like a copy.
 

Research Updates and Results of completed studies

  • Report of Research Study - Situations associated with increased likelihood of seizures for people with epilepsy and Fragile X.

  • Ongoing Research Study - Talking to children about a genetic condition.

  • Ongoing Research Study- Social Cognition in Fragile X Syndrome.

  • Completed Study -Results of Roche Trial of RO4917523 for Fragile X Syndrome.

  • Survey Closed - Fragile X International Caregiver Burden ONLINE Survey.

 

Fundraising  News and Acknowledgements

  • 100+ Club News

  • Family Fundraising Report

  • Society 2014 Lottery Draw Prizes and Winners

 

With this newsletter we have included a short survey - we would really love to know what you find the most useful about the charity - please spend 10 minutes to give us some feedback on your views of our services.

Please contact us via this site if you wish to make any comments about this or past or future newsletters? Please click here to get in touch.
 


 

October - November 2014

Our aim, as always, is to engage with the fragile X community, particularly with our fragile X families and supporters, by keeping them up to date with all things fragile X. In this newsletter we feature:

 

Family Story

One Family : Different Perspectives.This heartwarming family story gives an insight into how fragile X is experienced by the different members of one family.

“We are very proud parents and grandparents. Nature made her own decision to make us a bit different and maybe she knew what she was doing when she chose our remarkable children and grandchildren to be part of the Fragile X club!”    

 

Family Support Reports

The Care Act 2014

Support for Families Caring for Individuals Exhibiting Challenging Behaviour

Sleep Problems    

 

Research Updates

Situations associated with increased likelihood of seizures for people with epilepsy and Fragile X, Talking to children about a genetic condition

Social Cognition in Fragile X Syndrome

Assessments of language, speech and communication development

Assessments of language and speech development, and social and communication skills

Results of the Roche Trial of RO4917523 for Fragile X Syndrome

Fragile X International Caregiver Burden ‘ONLINE’ Survey

 

European Fragile X Awareness Day on 20 October 2014

#fragileXtraordinary : Our Twitter, Facebook, Flashmob at London Kings Cross Station, and Fundraising engagements

 

Last, but not least:

Message from the Managing Director, Message from the Chair

Family and Friends Fundraising Activities and acknowledgements

Winners of the 100+ Club lottery draws

List of the Fragile X Society’s Specialist Advisors

 

Enjoy!

If you would like a paper copy of this newsletter then please contact us on 01371 875100 or by sending us a message via this website.

 

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