Filling the void in Information available for Siblings living with Prader-Willi Syndrome

The Prader-Willi Syndrome Association of Victoria (PWSA Vic) would like to thank the Rotary Club of Box Hill Central and Blackburn South Community Bank Branch (BSCBB) of the Bendigo Bank for their generosity in providing funding to continue the Beyond the Diagnosis series of information booklets for those in the Prader-Willi community, their families and others who support the community.

The first two parts of this series, Beyond the DiagnosisA Guide for Parents and Beyond the DiagnosisKindergarten to Grade 5, were funded in a previous round of the Community Grants Programme and we are pleased to announce that the Rotary Club of Box Hill Central and Blackburn South Community Bank Branch of the Bendigo Bank have generously decided to further fund the next chapter of the Beyond the Diagnosis series.

The PWSA Victoria recognises that there is a void in information available for siblings who live with and care for a loved one who has been diagnosed with Prader-Willi Syndrome, therefore this next chapter in the ‘Beyond the Diagnosis‘ series project will begin to fill the void in information available to siblings and provide information to help them understand the complexities of Prader-Willi Syndrome and how they can best care for their brother/sister, and most importantly themselves.

To gather appropriate information for this project and produce a final product that will be useful, The PWSA Victoria will organise a facilitated, focus group of siblings to discuss topics they feel would be useful information to share and develop a book for siblings by siblings. This will be simple age-appropriate information in the form of a picture book that will be developed initially for younger siblings to be sent out with the initial Beyond the Diagnosis booklet where appropriate.

We hope to further develop the project to include a more informative booklet for older siblings with age-appropriate information.

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Article By Renee Di Genova

Renee enjoys working with organisations to improve business outcomes by implementing and reviewing procedures to assist organisations to work more efficiently, effectively and strategically. Renee is mother to 3 children, the youngest of whom was diagnosed with Prader-Willi Syndrome not long after birth. Renee now spends her days caring for her son and volunteering full time as President of the Prader-Willi Syndrome Association of Victoria, helping to build on the supports and services provided by the Association since 1979.