Fragile X Society Newsletters

Member Email Newsletters 

We send regular email newsletters to our members which include personal stories about Fragile X, useful information, the latest research news and updates about our events. You can quickly and easily sign up for free to become a member of our charity and keep up-to-date with all the latest Fragile X news! 

Supporter Mailing List

These emails are less frequent and 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 our members (in addition to the member email newsletters), as well as donors who sign up to receive our communications, via sites like JustGiving. 

Supporter Mailing List
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. 

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. 

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. 

 

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!

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. 

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.