Fragile X Society Blog

Jan 24, 2019

"You become more understanding of other people's difficulties": Lou's experiences

This article summarises an interview with Lou (age 45) about her experiences of living with the Fragile X premutation, which was...

167 views

Jan 24, 2019

"It's just daily life": Brianna's experiences of being a Fragile X premutation car

This article summarises an interview with Brianna about her experiences of living with the Fragile X premutation, which was conducted as...

106 views

Jan 24, 2019

"Knowledge is Power": Grace's experiences of being a Fragile X premutation carrier

This article summarises an interview with 'Grace' (age 45) about her experiences of living with the Fragile X premutation, which was...

146 views

Jan 24, 2019

"I wanted to meet somebody who would treat me like a princess": Emily's experience of

As a 27 year old woman with fragile X syndrome the world of dating can often be difficult and overwhelming. So, I thought the show 'The...

1,066 views

Jan 10, 2019

Research Update: Experiences of women with the Fragile X premutation

It is only fairly recently that research has started focusing on people who have the Fragile X premutation, i.e. individuals who have a...

1,876 views

Jan 10, 2019

Welcome, Caroline! Our New Families and Professionals Advisor

I have now been working at the Fragile X Society for 2 months and have been made very welcome. My mentor Wendy was absolutely brilliant...

133 views

Nov 27, 2018

Wendy's Retirement: Farewell messages & wise words

Just over 11 years ago I was working in a special school in North London. A colleague I had job shared with came to me and said “Wendy, I...

249 views

Nov 27, 2018

The unused power of Fragile X: A TED talk

We often only see the limitations of someone with Fragile X. And not what they can do. Yet, their special abilities could add tremendous...

572 views

Nov 27, 2018

Challenging Behaviours in Fragile X Syndrome: Investigating Environmental and Physiological Influenc

Challenging behaviours, such as self-injurious behaviour and aggression, are a significant concern for some people with Fragile X...

162 views

Nov 16, 2018

Ash and Tony's Story

Ash joined our family aged 5. My children were then 20, 18 and 14 and they regularly rode and helped out with a friend’s horses. When...

88 views

Nov 16, 2018

Preimplantation Genetic Diagnosis: A Family Story

“I remember reading about Pre-implantation Genetic Diagnosis about 10 years ago. Long before we were parents. It was only available...

200 views

Nov 16, 2018

Welcoming our new Chairperson!

We are delighted to introduce our new Chair: Dr Kirsten Johnson. "I am married to Jonathan and we have three wonderful daughters, two of...

158 views

Nov 16, 2018

Pragmatic communication by boys with fragile X syndrome: How do symptoms of autism spectrum and atte

Effective communication forms an important part of a child’s daily life. For example, producing and understanding speech are criticalfor...

282 views

Nov 14, 2018

Newsletter Update: Move to Digital Communications

We are proud that we spend our funds responsibly and we constantly consider our services in light of our financial position. As you...

89 views

Nov 14, 2018

Vishna's Gift

"Vishna is a very kind and loving individual, who is always thinking of other people. In the past Vishna has done fundraising for the...

103 views

Nov 14, 2018

Spectacular Swim-A-Thon!

We at the Fragile X Society are as grateful to Lewis Ross as his family and friends are proud of him for taking on a sponsored swimming...

23 views

Oct 24, 2018

"I know I’m not great with money and I need help to keep on track. What do I need to learn abou

Hi Girls, The first step is to figure out the usual costs of the things that you like the most (searching the internet works well). The...

22 views

Oct 24, 2018

"I like going on my phone but Mum worries about me going on different web sites and whom I’m ta

Hi Girls, How do you feel about this? Are you worried about the websites you visit or who you are talking to? It’s important to know what...

22 views

Oct 24, 2018

"Sometimes I can get confused about other people’s expectations and what it means to have a fri

Hi Girls, This is also something that’s confusing for a lot of people. The first thing to sort out is what you want a friend to do in...

19 views

Oct 24, 2018

"I worry that my daughter is vulnerable because she would agree to anything to be part of a gro

Hi Girls and Mums, Girls, part of being a Mum is feeling really worried that your children are not safe, but also, feeling really worried...

19 views

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