Fragile X Association of Australia in Sydney, Australia | Charitable organisation

Fragile X Association of Australia

Locality: Sydney, Australia

Phone: +61 1300 394 636

Address: Suite 204, 20 Dale Street, Brookvale 2100 Sydney, NSW, Australia

Website: http://www.fragilex.org.au

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• Charitable organisation
• Community organisation
• Disability service

25.01.2022 Jean Hailes for Womens Health is a not for profit organisation providing a strong voice on womens health issues to policy makers and service providers. Now in its sixth year, their National Womens Health Survey is a chance for every woman to fill in the missing pieces of the puzzle on a wide range of womens health issues - such as Fragile X premutation, and health consideration for women who have Fragile X syndrome. (15 min survey)

25.01.2022 New. Online workshops for people with intellectual disability and their families on pathways to mainstream employment - both finding a job and keeping a job.

24.01.2022 A new Fragile X clinical trial set to start around mid 2021, based in Melbourne. Actinogen Medical is an Australian pharmaceutical company. The trial will be recruiting adolescent males who have Fragile X syndrome.

23.01.2022 #relateable From our friends at Source Mama Source Kids

23.01.2022 This Thursday 3 December is International Day of People with Disability.

23.01.2022 Shoutout to the Ellinbank Football and Netball Club in SE Victoria - extraordinary fundraising ! Raffle tickets on sale til the end of September. Thank youto all of the generous community businesses who have donated prizes for the raffle, and to the fabulous team whove organised the raffle in honour of Cal and his family.

22.01.2022 Jean Hailes for Womens Health is an Australian not for profit organisation providing a strong voice on womens health issues to policy makers and service providers. Now in its sixth year, their National Womens Health Survey is a chance for every woman to fill in the missing pieces of the puzzle on a wide range of womens health issues - such as Fragile X premutation, and health considerations for women who have Fragile X syndrome. (15 min survey)

20.01.2022 Our friends at Raising Children Network have released a new podcast helping children and teenagers reconnect with school. We know some children are struggling ...to return to school after a long period of remote and flexible learning. You can listen to this great resource here: https://raisingchildren.net.au//podcasts-and-webi/podcasts raisingchildren.net.au

19.01.2022 Last chance to order our FX Christmas cards! Stocks are very low :-) A great way to support our fundraising, and to let family and friends know you are thinking about them over the Christmas season. $20 per pack of 10 cards, incl GST & postage. Order online or msg us https://www.fragilex.org.au/new-christmas-cards-for-2020/

19.01.2022 As wearing a mask in public becomes more common in Australia, either because its mandatory where you live or because you choose to wear one, Aspect has develop...ed helpful resources for families and autistic people. Download #tips for wearing a #mask now, on our website . Well be adding a social story to our list of resources very soon so stay tuned. https://www.autismspectrum.org.au//helpful-resources-for-f See more

18.01.2022 This online workshop is for school leavers with intellectual disability and their families. It aims to provide the information you need at this stage to find and keep work in employment. Part of a series of workshops led by Inclusion Australia - National Council on Intellectual Disability

18.01.2022 The NDIA recently made some changes to the way they fund transport in your #NDIS plan. We wrote a blog with everything you need to know about those changes. https://bit.ly/3eoat2D

17.01.2022 Recently published by the Genetics Department at Emory University School of Medicine this is an excellent resource on the symptoms and genetic cause of FXTAS: Fragile X-associated Tremor Ataxia syndrome, a condition which can affect older male carriers of the Fragile X premutation and a smaller number of older female carriers.

16.01.2022 Thinking about everyone in Victoria

16.01.2022 Victorian and New South Wales NDIS participants who rely on face-to-face supports and assistance with their daily living will be able to claim the cost of personal protective equipment (PPE), including masks.

16.01.2022 This US youtube series aims to change the way people think about disabilities "one creation at a time". In this fun video Anie is really excited to be in the kitchen helping Andy Davenport from Krispie King make a special football helmet cake. Great way to raise awareness of #fragilex

15.01.2022 Shoutout to the amazing Kitty Stokes who has made a million graphics for #julyisfragilexawarenessmonth inspired by the amazing Tommy & Harry

15.01.2022 Our free e-book, Adults with Fragile X Syndrome: Making a Better Tomorrow, helps parents and caregivers of adults with Fragile X syndrome make a better tomorrow... for them. They deserve it! We are pulling together a comprehensive guide to transitioning into and continuing to care for adults with Fragile X syndrome. The first two chapters are now available to download: Transition to Adulthood and Transportation. It is nearly 25 pages of information and practical advice on: helping them become more independent through transportation, with up-to-date guidance on ride-sharing; waitlists for services; SSI; health insurance; transition to a new primary care doctor; financial planning; guardianship; and, more. Download your free copy today: https://hubs.ly/H0w9VVd0

15.01.2022 It is important for people with disability to speak up if something is wrong with their #NDIS service. Thats why we have developed the Your Service Your Rights... conversation cards. The cards help you understand and speak up to get a good service. Click below to find out more and order your cards.

15.01.2022 By reaching out to our friends and letting them know that were there for them, we care and want them to feel safe and supported when theyre going through a tough time, theyll know they can open up to us. Learn how to be a good friend and ask R U OK? at www.ruok.org.au

15.01.2022 Perth turned on a lighting treat to celebrate Fragile X Awareness Day. Just some of the highlights here! #lightupforfx

14.01.2022 The NDIA is proposing some changes to the NDIS scheme operates. It has published 3 discussion papers and is asking for community feedback on: 1. Proposal for Independent Assessments 2. Budgets and plan flexibility 3. Early interventions Feedback open til the end of February 2021.

14.01.2022 They're here! So Christmas must be on the way :-) Order online - these are a fundraiser for us, and a fantastic way to connect with your family and friends this festive season https://www.fragilex.org.au/new-christmas-cards-for-2020/

14.01.2022 #understandingautism #understandingfragilex

14.01.2022 Celebrating #naidoc2020 This year's theme Always Was, Always Will Be recognises that First Nations people have occupied and cared for this continent for over 65,000 years. See the official #naidoc website for more information https://www.naidoc.org.au/

14.01.2022 Have your NDIS questions answered by the NDIS Brotherhood of St Laurence in their weekly Facebook NDIS Q & A Each week a new topic will be introduced and youll... have the opportunity to ask your questions direct to an LAC who will be online and ready to respond. Join the first general Q & A session on Thursday 6 August at 2pm on their Facebook page https://bit.ly/30rorg4

14.01.2022 Coming up soon... 3rd December is International Day for People with Disability

13.01.2022 Wearing a mask can help keep you and others safe from Coronavirus. We have an Easy Read info guide about the different types of masks... how to wear a mask safely Read the info at our website.

13.01.2022 Our new Christmas cards can now be ordered online! (shop page hosted for us, with thanks to Nyleta McRae and Playful Treasures)

13.01.2022 Sophia James lives in the US but has an Australian FX connection. Her mother Naomi Star and grandmother Leonie Star were Presidents of the Fragile X Association of Australia charity when Sophias brother James was little in the late 90s and early 2000s. Here Sophia talks about what she has learned from her brother James.

12.01.2022 A male who inherits a full mutation exhibits Fragile X syndrome because his only X chromosome contains the mutated gene. A female may not be as severely affecte...d because each cell of her body needs to use only one of its two X chromosomes and randomly inactivates the other. https://www.fraxa.org/fragile-x-syndrome/cause/ #FragileX #FragileXAwareness #Community #Gratitude #FragileXSyndrome #Nonprofit #FXResearch #FXAwareness #TealTakeover #Research #Innovation

12.01.2022 New book edited by DR RANDI HAGERMAN and PROF PAUL HAGERMAN with chapters written by many of the international experts on Fragile X syndrome and the Fragile X premutation.

12.01.2022 Well, #lightupforfx done and dusted for 2020! Shoutout to all of the local councils, government authorities and organisations which supported this Australia-wide celebration of FX day by lighting up bridges, concert halls, art galleries, theatres, town halls, and more!. Many thanks to all of the families and friends who went along to their local landmark, talked to the media about Fragile X, shared photos and who followed along on our social media.

12.01.2022 Thinking about our community in these difficult times

12.01.2022 World Kindness Day :-) https://www.randomactsofkindness.org/world-kindness-day

11.01.2022 Sensory sensitivity also affects many people who have Fragile X syndrome. #understandingautism #understandingfragilex

11.01.2022 From today, Victorian and New South Wales NDIS participants who rely on face-to-face supports and assistance with their daily living will be able to claim the cost of personal protective equipment (PPE), including masks. These (temporary) changes apply where coronavirus (COVID-19) is active in your community, and the use of PPE is consistent with current health advice. CLICK ON THE LINK FOR MORE DETAIL:

10.01.2022 Celebrating #naidocweek #NAIDOC2020

10.01.2022 Grand Finals Melbourne Cup So, feeling well on the way to Christmas prep. We have 2 new FX Xmas cards this year :-) Great way to spread the word about Fragile X. And to help us raise funds so that we can be of support to our community. $20.00 per pack of 9 cards, inc GST & postage. To order: message us or email to [email protected] https://www.fragilex.org.au/new-christmas-cards-for-2020/

09.01.2022 Heres some of the FAQ people with a disability from Victoria have been asking us over the last 2 days. Naturally, people are worried about so many major change...s, wanting to keep safe and looking after themselves and their loved ones. Thanks for trusting us to help you. Weve been blown away at peoples patience and understanding as they work out, yet again how to adapt to these changing circumstances. We keep in regular contact with the Government, testing clinics, disability services and health organisations so that we have the information at the ready for people. Of course many peoples questions and situations are complex, so they wont fit into a box, or appear in a FAQ. Thats where our Information Officers come in handy in helping to work out just what the person needs. Do take care, we know people are tired and it is a hard time. There is lots of help out there, and we are happy to help you get through this time. The IDEAS Team Image caption: 2 information officers at their desks, one information officer answering the phone and a woman, wearing a mask and using a wheelchair. Words say FAQ, #COVID19, #Victoria, #DisabilityInformation https://www.ideas.org.au//faq-covid-19-from-people-with-a-

09.01.2022 Are you feeling isolated or worried because of coronavirus (COVID-19)? In-language help and information is available for people with disability, families and ca...rers. Call the Disability Information Helpline on 1800 643 787 and ask for an interpreter, or call Translating and Interpreting Services on 131 450 and ask for 1800 643 787. Information about the Helpline is also available in 63 languages. Visit our website for more details. #DisabilityHelp See more

09.01.2022 The Examiner Newspaper, Launceston today features Ben Gower :-) From his familys journey to a Fragile X diagnosis for Ben, his time at school through to his community volunteering and to his permanent employment at Coles in Launceston. Ben is rightly proud of his achievements! Many thanks to local MP Rosemary Armitage for writing this wonderful profile on Ben. Jo Ryan

08.01.2022 Video from Dr Rebecca Shaffer: Helping Individuals With Fragile X Syndrome Wear a Mask. Plus: Jayne Dixon Weber provides helpful tips on how to get your loved one with FXS comfortable wearing a mask

07.01.2022 Thank you for being part of #julyisfragilexawarenessmonth

07.01.2022 Were keen to hear the views of the Fragile X community in Australia on what were doing to support you or those in your care and on the work were doing to raise awareness of FX and advocate for the community. Your feedback will help shape the focus of Fragile X Association over the coming years. Please take 10 minutes, if you can, to complete a short series of questions: https://www.surveymonkey.com/r/FeedbackOnFragileXAustralia

06.01.2022 This has great Friday vibes! Fragile X dance video made for us by Nyleta McRae to the soundtrack Geronimo. Shoutout to Brisbane band Sheppard for kindly allowing us to use their soundtrack. Great to see our FX kids young and old loving this

06.01.2022 Today is #internationalmensday A day to #celebrate boys and men

05.01.2022 Special Christmas card design made for us in 2020! Help to spread the word about Fragile X while keeping in touch with friends and family this Xmas season :-) Order online

04.01.2022 Looking forward to Christmas :-) Our second FX card can be ordered online. Great way to to keep in touch with friends and family this festive season!

04.01.2022 Actinogen partners with Murdoch Children's Research Institute (MCRI) on XanaFX study. The MCRI team of investigators are world leaders in Fragile X research and... have considerable expertise in paediatric clinical trials and natural history studies in Fragile X and other rare neurodevelopmental disorders. XanaFX, a Phase II proof-of-concept study, will be conducted at Melbourne Children’s Trials Centre at MCRI and the Royal Children’s Hospital. #fragilexsyndrome #clinicaltrials See more

03.01.2022 Terrific article in the Warragul Drouin Gazette ! Cal Wallace is not quite two years old - a super happy farm boy, who is starting to run and loves to kick a soccer ball! His early FXS diagnosis means hes already getting benefit from therapies. The Ellinbank community are exceptionally supportive The Ellinbank Netball & Football Club is running an awesome raffle to raise funds for our family support service. And Cals mum and aunt planned to run a marathon in March for FX awareness - the marathon is yet to happen due to covid, but their friends and families raised a fabulous amount to help fund the family support we offer to the FX community.

03.01.2022 These free workshops will be helpful for anyone planning a pathway to work opportunities for their #fragilex teenager.

03.01.2022 Following a period of consultation, the NDIS is looking to make changes over the next 18 months to improve the experience of participants. For example: Independent Assessments, which will be introduced in 2021.

03.01.2022 If your child is a secondary school student with #fragilex this series of workshops will give you tips for planning a mainstream employment pathway for your child. This suite of online workshops is being run by 3 organisations to cater for the differences in the education curriculum in each state - but the generalities will apply whichever state you are in. Family Advocacy CRU - Community Resource Unit Ltd. Imagine More A fantastic initiative, funded by an NDIS ILC grant.

03.01.2022 Many thanks to Rosemary Armitage MLC who spoke in the Legislative Council in the Parliament of Tasmania this week to raise awareness of Fragile X. In particular Ms Armitage spoke about Ben Gowers journey to Fragile X diagnosis, his many achievements while living with Fragile X, and the important support provided by his parents Jo Ryan and Gary Gower.

03.01.2022 International Day for People with Disability coming up soon - 3 December.

02.01.2022 #IDPwD is a United Nations sanctioned day to celebrate people with disability. The UN theme this year is: Building Back Better: toward a disability-inclusive, ...accessible and sustainable post COVID-19 World Find out more at www.idpwd.com.au/about #idpwd

01.01.2022 Celebrating #naidoc2020 This year's theme is Always Was, Always Will Be. This theme recognises that First Nations people have occupied and cared for this continent for over 65,000 years. The official #naidoc website has information resources and images https://www.naidoc.org.au/