The Fragile X Society has grown over the years from a small, passionate group of family volunteers to a thriving community of individuals, families, professionals, and researchers, all supported by a dedicated staff team. During this time, we have had the pleasure of providing direct support to over 4,200 families, as well as information to many more. 


Below, we hear from some of the individuals and families we have had the pleasure of meeting and working with through the years. 


Interested in sharing your story? Contact us! 

Real Life Stories

"We would not have our lives any other way"

Paula discusses her experience with FXPOI, and some of the successes and challenges that Ross has faced. 

"It seemed like an impossible dream"

Lucie reflects on moving out to her own flat and her Mum, Sarah, looks back to the early days of seeking a diagnosis and their journey from there. 

I wish…

Kerry remembers the fear and confusion of the early days of diagnosis but celebrates how life has changed in ways she never could have imagined. 

Setting up Support in Australia

Janine shares the story of her family and their move to Australia, where they set up a new support group. 

Moving Out
Moving Out

Jim shares his family's story, including Martin's move to his own flat! 

Supporting Siblings

Katherine's three siblings all have Fragile X Syndrome. In this piece, she shares some of her family's joys and challenges.

"I love my job!"

Hannah and her mum, Jo, both reflect on their journey over the last 25 years.

A Serious Case of Empty Nest Syndrome!

Edel shares the story of son Ross, gaining independence and moving in to his own flat!

John's Story

Lorraine Peacock reflects on the journey of brother John.

Chloe's Story

Pippa Wyndham-Pearce shares daughter Chloe's story, and reflects on her growing confidence as she moves from her teens into young adulthood.

The Caroll Family: Journey with a Happy Ending

Zoe Carroll talks about her experiences, from diagnosis, to family life today. 

Kunal's Story

One young man's experiences of life with Fragile X...

Elizabeth, mum to daughters Soran and Maes, talks about Fragile X in girls.