Respite Plus Forum 2014 - Beyond Respite

The inaugural Respite Plus forum was held at The Novotel Twin Waters Resort on 29 and 30 March. This was an exciting time for all, as Equity Works welcomed new families, some of whom had never met another family with a child with Rett Syndrome together with extended family, academics and the wider community to explore the many complexities involved with the condition.

The inaugural Respite Plus forum was held at The Novotel Twin Waters on 29 and 30 March.  Hosted by Equity Works, the forum was attended by 94 guests from the Rett Syndrome Community which included representatives from 27 families comprising 46 parents, 16 girls and young women living with Rett Syndrome, 18 siblings and other members of the Rett Community. 

Originally the anticipated attendance for the forum was estimated at 65 people. Increased uptake of the programme during the first quarter of this year resulted in attendance being in excess of 100 people.

Presenters in attendance included:

  • Professor Helen Leonard
  • Professor John Christodoulou
  • Dr Carolyn Ellaway
  • Dr Jennepher Downs
  • Professor Karen Nankervis
  • Mrs Wendy Chandler
  • Mr Matt Armstrong
  • Mr Dennis Lo
  • Family speakers – Mrs Jodie Brodie, Mrs Cathy Johnson and Miss Julia Kenward

Parent to Parent supported the attendance of Mrs Wendy Chandler and Mr Matthew Armstrong.

Mrs Chandler and Mr Armstrong have engaged with a number of families and the forum was an opportunity to continue contact with those families and encourage others to participate in the planning offered within the program.

Feedback from families, staff and invited guests indicated that the event was worthwhile in bringing families with shared experiences together to build community connections and share knowledge.