Families lead the way by telling their stories

The FIND website would not be what it is today without the input from the families and individuals with rare genetic syndromes who have contributed over the last twelve months.  When the website was first designed we met with families who told us that what they really wanted to see, alongside research findings, were families stories and accounts.  Based on this we have met with around twenty families to begin to gather these stories and build a short film library that we will add to over the years. We feel that it is these accounts that make the website come alive and help to bridge the gap between research and people’s lived experiences.

At a recent parent workshop held by StoryWorks, four families of children with different genetic syndromes came together.  A warm, honest and supportive discussion followed and the day came to a close after each family recorded their experiences of being parents.  If you would like to listen to these stories they can be found across our website and can be accessed by clicking each of the following links below:


To hear Salli and Nick talking about their child with Smith-Magenis syndrome click here.

To hear Rob and Jane talking about their child with Angelman syndrome click here.

To hear Sally-Anne talking about her child with Smith-Magenis syndrome, click here

To hear Steve talking about his two children with fragile X syndrome, click here.

You can let us know what you think of the parent stories here. We cannot thank everyone enough for their support with this project!

Visit StoryWorks' website here.


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