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25.01.2022 Researchers at Scope are testing a survey that explores the impact that services or supports have on children/ young people with disability. The researchers are inviting carers of children/ young people (0-14 years of age) with disability to take part, which involves completing the anonymous survey online, which takes about 10 to 15 minutes. Surveys such as this help shape the care of tomorrow so if you are a carer of a young person with a disability your time would be greatly appreciated! #CDLS #cdlsawareness #raredisease #research #researchprojects

25.01.2022 Life’s not easy sometimes for so many - especially in these strange COVID times. Here’s a hit home message about the simple things and about coping during those hard times. #strongwords #lifelessons

25.01.2022 Stay tuned for next weeks global video!! #cdls #cdlsawareness #StrongerTogether #thisisbelonging

24.01.2022 On Saturday 19th September 2020 the CdLS Association will hold their AGM. This year its all a bit different and will take place online via video conference. It's also a significant meeting. After 35 years of service to the association, including ensuring that it even became an association to start off with, both our current President Jenny Rollo OAM and current Treasurer Phyl Crawford OAM will retire from their positions. A huge and heartfelt thanks from every single person they have even had an interaction with is too little to acknowledge the huge positive impact they have had on the CdLS Community both in Australia and worldwide. We look forward to welcoming everyone to our AGM with further instructions to follow on how to join and look forward to many nominations to fill the very big boots that are left!

24.01.2022 What is awareness? Everyone has a different measure of awareness. How do we raise awareness of CdLS and any cause close to our heart? In the world of social media it’s about interactions and sharing. Our page is relatively small and our following is relatively small - for now! However, this week we have reached over 600 people, our post engagements are up 4000% (yes 4000%)... Everyone of these people is someone who may not have been aware of CdLS before this post or engagement. How can you help? Share our posts, interact with our posts, reach out and ask for info! YOU are the way we engage and make people aware! Thank you! #cdls #cdlsawareness #raredisease #rarediseaseawareness See more

20.01.2022 Here is your invitation to our Annual General Meeting at 2.30pm on Saturday 19th September. All welcome but only financial members are able to vote and hold positions on next year's committee. We look forward to seeing you then!... If you would like to join the meeting please message us for the link and password. #cdls #cdlsaustralasia #agm #meeting

20.01.2022 We have been having a push from our committed followers! We are now sitting on over 500 page followers!! Stay tuned for big things coming in the next few weeks! #cdls #cdlsawareness #socialmedia

19.01.2022 Want to help support CdLS Australia? Become a member of the association! Your membership fees will help contribute towards us continuing to deliver support to families and holding regular updates for all of our CdLS community. Leave your name and email address in the comments box to help keep our membership roll up to date! ... https://www.paypal.com/cgi-bin/webscr #cdls #cdlsawareness #membership

17.01.2022 Today one of our Exec, Gwilym Conran, took part once again speaking on behalf of his son Marcus as part of the annual Paediatrician exams. They choose complex ‘long’ cases to examine the junior doctors moving along to registrars etc. The consultant team do a consult and then the junior doctor does the same, who is subsequently quizzed by the senior team. Sometimes it might seem strange to volunteer for yet another opportunity to repeat the same story you already have, what fe...els like 800 times before. But the biggest opportunity here is to share CdLS with another junior doctor - who may have only heard about it in passing at medical school. That’s one more clinician who knows a bit more about CdLS. One more clinician who has some working experience of CdLS. Awareness is a wonderful thing. Little by little. #cdlsawareness #raredisease #cdls See more

09.01.2022 CdLS Association (Australasia) Inc President’s Report 2020 This is my final report - ever. Normally I thank committee members who have given their time over the past year, but as this is no ordinary President’s Report I shall instead reflect upon the establishment of the Association and the people who have kept it going since the beginning. Until the advent of the NDIS all services for people with disabilities were begun by families responding to a need. This includes educati...Continue reading

08.01.2022 Wednesday this week is International Day of Sign Languages. Many people with CdLS find many alternative ways to communicate other than speech. One of these may be sign language. If I can offer one piece of advice it’s download this app and master 1,2 or 3 signs! It’ll make someone’s day and importantly it will make yours!! This app is free for the next week and is a great resource to have on your phone or communications device! #cdls #cdlsawareness #auslan #AAC #communication

02.01.2022 Key Word Sign (Australian version of Makaton) is a key tool for so many of our young CdLS’ers! It’s AAC (Augmentative and Alternative Communication) awareness month and speaking from experience theses resources are invaluable!

01.01.2022 We have been a bit quiet in the past few weeks! Don’t fret though! There’s exciting things coming and CdLS Australia has the fresh enthusiasm of a new exec and committee behind it! Big things coming your way! #cdls #cdlsawareness