New children’s book – Chloe and Tom, a story about siblings and Fragile X syndrome

March 29th, 2024

Chloe and Tom A story about Siblings and Fragile X is a new Australian children’s story written by the parent of real-life Chloe and Tom (older now!)

The story is a gentle introduction for younger children to a conversation about Fragile X. It’s a warm, positive story of sibling love, understanding, and inclusion.

The author of the book is Mel Mikkselsen, a special education teacher and a member of Fragile X Association of Australia.  The story is presented in a way which supports the Fragile X learning style, with minimal words and an emphasis on richly coloured and detailed images.

This paperback book can be ordered from Amazon (the publisher of the book), Booktopia, Barnes and Noble and some other online sites. E-book version coming soon!
Contact us for additional information about availability.

 

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Survey for parents / carers of adults with Fragile X syndrome

FRAGILE X | ADULTS & AGEING. We're undertaking the first Australian study on the support needs, health & wellbeing of ADULTS with Fragile X syndrome. Our goal is to enhance quality of life for adults with Fragile X syndrome as they age. We invite parents or carers to participate in our SURVEY. The survey has questions about: 1. GENERAL HEALTH AND WELLBEING of the adult with Fragile X syndrome. 2. EFFECTIVENESS OF EXISTING SUPPORTS for the adult with Fragile X syndrome as they age. 3. FUTURE PLANNING concerns of families & carers who provide support 4. ANY GAPS IN SUPPORTS OR SERVICES which may impede best outcomes in care. From the information contributed through the Survey we will develop training modules for frontline carers and tools for advocacy. The Survey can be completed ONLINE, in PAPER FORM, or by PHONE. Contact us for more information - support@fragilex.org.au or 1300 394 636

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