National Rett syndrome conference in Geelong, an outstanding success
Above: Its 5.30pm on Saturday 21 November and our conference has just concluded.
Thank you to all those who stopped in Geelong on their Rett syndrome journey.
Conference details: Dates: 19 (Thurs), 20 (Fri) and 21 (Sat) November 2015 Venue: Novotel Geelong, Victoria Theme: ‘The Rett Syndrome Journey: Pathways to Follow”
Conference highlights:At its peak, the most people in attendance at the conference was 220; Attendees came from all Australian States and Territories. Presentation of the first ever RSAA awards in recognition of service to Rett syndrome Kathy Hunter (USA) for her service to Rett syndrome, both in the US and abroad, as President of the International Rett Syndrome Association for 23 years and author of the ‘The Rett Syndrome Handbook’; Janelle Lillis (Australia) for her services to Rett syndrome in Australia in terms of raising funds for research and generating national awareness, over a 10 year period; Peter Werchon (Australia) for his service to the Rett Syndrome Association of Australia as its Treasurer for 26 years and Bill Callaghan (Australia) for his service to the Rett Syndrome Association of Australia as its President for 26 years. Each award took the form of a handcrafted silver pendant which had been modelled on the RSAA logo by Geelong jeweller John Hollis. 30 speakers (4 of whom resided overseas), 22 topics. The kids’ club in which persons with Rett syndrome (24 of whom attended the conference) and their siblings, were entertained by face painters, an organist, volunteers, carers and a harpist. Tribute to those with Rett syndrome, dinner and raffle of a 4 week trial with a Tobii Eye gaze device donated by LinkAT Assistive Technology. Free oral examinations for those with Rett syndrome by dentist Dr Yvonne Lai. First ever RSAA annual general meeting at which the Committee members present came from around Australia. First ever presentation by the head of an Asian Rett syndrome Association, namely, Pam Mayo-Roman, Rett Syndrome Philippines. Comaraderie that was evident among families, speakers and exhibitors, throughout the conference. Post conference informal get-together at the Carousel (an indoor merry-go-round). A hotel room which acted as a change room, etc., for those with Rett syndrome. The huge commitment shown by Kathy and Scott Hunter (USA) and Sally-Ann Garrett (Ireland) who each travelled half way round the world to attend and present. Conference comments: “AA++++” Scott Hunter (USA); “I loved the way the presentations sequed this morning (Friday). The content flowed almost seamlessly from Kathy Hunter to me, to Mary-Louise, and to Tracey Bode. Great to be a part of the morning team! “ Sally-Ann Garrett (Ireland); “It worked so well Sally-Ann, as if planned! Love the great family focus of the conference. I’ve never seen it done so well! Congratulations to Bill and committee!” Tracey Bode (Australia); “Just spent an amazing weekend down in Geelong at the first National Rett Syndrome Conference. We got the chance to meet so many amazing families as well as listen and learn from many speakers and learn about different topics on Rett syndrome. Mia also got the chance to have a go at an eye gaze computer.” Paul Wellington (Australia); “Congratulations on creating such a wonderful conference! I want to thank you and the committee for providing me with the opportunity to connect with the girls and women who have Rett syndrome and meet with their families. It was also an amazing opportunity to interact with the presenters and gain a broader understanding of the medical challenges associated with a diagnosis of Rett syndrome.” Elizabeth Lea (Australia); “As one of the carers, a massive thank you to the girls for being perfect.” Anonymous (Australia); “Thank you for welcoming myself and my husband into the Rett family with open arms. We have enjoyed the conference and have learnt so much. Carn’t wait for the next one.” Pamela and David Daniel (Australia); “I just wanted to thank the committee and other helpers most sincerely for organising a most amazing conference! I was blown away by everything; the speakers; meeting the other families, especially the girls; the hotel; the food; etc., there is absolutely nothing I could fault. I am so grateful for everyone’s time and great efforts to make this conference happen. It was truly a memorable event and I came away on a real high!” Ursula Nesci (Australia); “The past few days have been amazing. The Rett conference had so much info i still need to process it all. We had such wonderful speakers full of advice and help. Our wonderful international speakers Kathy Hunter, Sally-Ann Garrett and Pam Mayo-Roman have left such lasting impressions with their words of wisdom. The most amazing part was getting to know such beautiful girls and ladies and their wonderful families. You guys are no longer social media friends you are a part of our Rett Family. We were so lucky to meet families from every state and territory of this fantastic country.” Donna Buda (Australia); “Photos don’t do this justice, most beautiful thing I have seen in a long time – a room full of Rett angels listening to the harp!” Jayne Bowden (Australia).