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CdLS AUSTRALASIA
Australian Conferences
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2003 INTERNATIONAL CONFERENCE - SYDNEY, AUSTRALIA From 3 – 6 July 2003, Sydney Australia was home to 44 people with CdLS, their families and carers, and professionals who are experts in this rare genetic condition. In fact over 300 people from 10 countries attended the 2003 CdLS International Conference and during those four days, new medical information was presented, friendships were forged, support was shared and hope for the future revived. Wednesday, 2 July 2003 A joint meeting of SAC and Federation Council members was held and their report is now available below the conference report on this page. Thursday, 3 July 2003 – Professionals Day This was a one-day medical conference, a first for any CdLS gathering in the world. It gave doctors, therapists and educators an opportunity to hear what the experts had to say, have their questions answered, and share their own experiences of their CdLS clients. The day began with sessions from members of the CdLS Scientific Advisory Committee (SAC) who gave an overview of the CdL Phenotype in the Young Adult Patient, Dysmorphology Changes, Clinical Presentation and Problems followed by Medical Guidelines for Clinical Follow-ups. Prof. Chris Oliver presented his latest research findings on Self-Injurious Behaviours and Dr Angelo Selicorni also presented a detailed research report on Kidney Problems in Patients with CdLS. After lunch was dedicated to Workshops on the topics of Teaching Strategies and Assessment of Children with Multiple Disabilities; Gastro-oesophageal Reflux and other GI Problems in the New Medicine Age; Behaviour – Understanding and Managing Problems; Communication – Language delays and potential for computer aided communication and Feeding Difficulties. Friday, 4 July 2003 The Family Conference was officially opened by Her Excellency, Professor Marie Bashir AC, Governor of NSW, who also joined the families for a typical Aussie BBQ lunch. Following a welcome from the CdLSAUS Vice-President and a local Aboriginal Elder, the Conference was underway with presentations from members of the SAC and Australasian medical specialists. Families were given an update on Genetic Research and General Health Issues for Adults with Disabilities. “Ask the Doctor” Panel was very popular and extremely successful. Parents and caregivers were able to pose their questions to experts in the field of Ophthalmology, Dentistry and Growth and Development. Saturday, 5 July 2003 The morning began with Dr Bryce Meads presenting his research results on Hand Differences in People with CdLS. Dr Mary Morse gave an interesting talk on educational issues and showed hands-on examples by way of video of a delightful young lady with CdLS, with a mischievous sense of humour. Dr Marjorie Goodban gave some practical and useful tools in assisting our children with developing speech and language. Dr Chris Oliver finished the morning session with a comprehensive report on his research into Self-Injurious Behaviours in CdLS. After a lunch of Italian fare, the afternoon was devoted to Workshops which were well-attended and very informative. Nutritional, Metabolic & Environmental Influences on Children’s Health was presented by Dr Dr Robyn Cosford – an expert in this field. Her report was printed in full in KIT (Keeping in Touch). A precis of her report is on the MEDICAL PAGE For 1½ hours, parents and caregivers were able to empathise with their children’s needs during the excellent presentation of the hands-on workshop of the Impact of Sensory Deficits on Children with Severe Communication Impairment. Jo Moss and Jenny Sloneem reported on their findings of Behaviour Management as a result of their research into self injurious behaviour. The Dads’ Meeting was an excellent opportunity for fathers to connect, share ideas and concerns. The Nature of Grief provided parents with a safe and supported environment where they could express their emotions and feelings of grief. Banquet and Bush Dance The Banquet was a great opportunity for all to unwind, meet new friends, catch up with old ones and have fun. And did we have fun!!!!!!! Guests dined on a feast of hot and cold dishes which included Australian lamb and seafood, followed by a sumptuous selection of desserts with the Aussie Pavlova taking pride of place. Tables were decked out with bags of Australian lollies (candy) and individual souvenir "cling-on" koalas. The Bush Dance was a very popular choice and everyone joined into a dance or two at some stage during the night. I’m not telling any secrets BUT – Who was the National Leader who overdid the dosey-doe-ing and was limping the next day? Name the professional that did a great “rocking chair” during “Home Amongst the Gum Trees”!! Which UK visitor put on an unconvincing performance of disliking Aussie beer?? Sunday, 6 July 2003 No one seemed the worse for wear after Saturday Night’s party and it was down to business early with workshops on Recreation Options, Siblings Issues for Parents and Looking to the Future. Drs Lynette Gillis and Cheri Carrico gave very informative and helpful sessions on Gastroenterology, Reflux and Feeding Issues. The final General Session was opened by Dr Alex Levin who gave an overview of the SAC’s anticipated role in the future. Alan Peaford was introduced as the newly elected Federation Chairperson. Ulla Mulger gave an interesting overview of the Italian Association for CdLS and presented a very tantalising view of Italy and all it has to offer as the venue for the next International Conference in 2005. Following the official closure of the Conference, delegates enjoyed another lunch of international cuisine before venturing out to the Blue Mountains. Children’s Activities In house care was provided by the Bogota New Jersey Girl Scouts headed by Kathy and Gene Van Buren. There was great rapport between the children and the Scouts who entertained them with games and videos whilst their parents attended sessions. Students from the Nepean College of TAFE Childcare Course provided 1:1 care for people with CdLS who accompanied their siblings on the many outings organised by the Australian Committee. The outings included a trip to Featherdale Wildlife Park, home to some of the unique animals found in Australia. On Saturday the kids went to a movie followed by lunch at McDonalds and finished off the afternoon with Ten Pin Bowling. Sunday was another busy day with time spent at Panthers' Kaos Games Room followed by Aqua Golf. Congratulations to Phyl Crawford and her team for the organisation involved in achieving the smooth running of the successful child care program. It wasn’t all fun and games though as a Siblings Workshop was held for children over 5 years of age. This session was an excellent opportunity for siblings, both children and adults, to express their feelings, anxieties and fears for the future. Whilst it was an emotional session, the kids came away with a sense of “not being alone”. Many new friendships were formed during the three days of the Conference. Kids who had not previously known each other were seen “hanging out” as best friends by Sunday afternoon and many tears were shed when it was time to say farewell. Email addresses were exchanged with promises of staying in touch. Congratulations to Jenny Rollo and her dedicated team of helpers for the successful hosting of the 2003 CdLS International Conference!!! 
We were honoured to have the family portion of the Conference officially opened by Her Excellency, Professor Marie Bashir AC, Governor of NSW. Her Excellency has kindly given permission for her SPEECH to be reproduced here.
The Federation Council met on 4 July 2003 during the International Conference at Penrith. Countries represented were Australia, Canada, Denmark, Italy, Portugal, United Kingdom and the United States. We received apologies from France, Japan and the Netherlands. Alan Peaford (the English leader) was elected the new Chair of the Council. We also set up a three person executive, consisting of the Chair, a representative of the country which is hosting the next Conference and the immediate past Chair. So the three people are: Alan as Chair, the representative from Italy, Ulla Mugler, and Peter Crawford as the immediate past Chair. The Council had fruitful discussions with the International Scientific Advisory Council. During their meeting, they re-organised elements of their international structure which will enhance its ability to work with the Federation in every country. They propose that each country will appoint a professional director (not necessarily a 'medical' director) who will thereby become a SAC board member. When each country has appointed its own professional director the International SAC will look at which areas of expertise are covered by those directors and appoint other experts to fill in the gaps. (The idea is that Alex Levin, the new Chairman of the International SAC, will help each country, if they want to ask his help, to choose their professional director -who will be an SAC member. When all the countries have chosen their professional directors, Alex will see what fields of expertise they cover and will then add to the SAC by inviting other experts so that there will be at least one if not two experts covering every field.) In addition, to assist liaison, the Chair of the International SAC will sit on our Council and our Chair will sit on theirs. The Federation Council decided to adopt in principle three wide ranging functions for the Federation: 1. to liaise with and ‘manage’ the International SAC (in the context of their insistence that they work for us) 2. to be a forum of best practice in serving our CdLS families (exchange ideas and information) 3. to act as a resource base for the wider family of people affected by CdLS throughout the world for both research and for families moving from one country to another. With regard to the ‘Ask the Doctor Online’ facility, the Federation Council decided that each country should develop its own "Ask the Doctor Online' for its own website but that the answers would still be all stored in the one database. This Data base of responses to previously asked questions is to be shifted from the US website to the HUB. The United Kingdom (England) will administer the HUB. The Federation Council decided to establish an annual levy of $US3 per CdLS person in each country not only to help fund the development and maintenance of the HUB but especially to establish a fund to ensure that an adequate representation of SAC members comes to each International Conference. Each country will be responsible for funding its own professional director to each International Conference and the general fund will be used to cover any other fields thought necessary for that conference. The Federation Council also decided that Canada will host the 2007 Conference.
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