Spinocerebellar Ataxia Queensland in Brisbane, Queensland, Australia | Non-profit organisation

Spinocerebellar Ataxia Queensland

Locality: Brisbane, Queensland, Australia

Phone: +61 414 717 235

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• Non-profit organisation
• Community organisation

24.01.2022 United Against Ataxia

23.01.2022 We are thrilled to announce details of our latest research study funded in partnership with Action for A-T. The 12 month study costing 98,200 is being led by ...our very own Dr Samuel Nayler at the University of Oxford. Dr Nayler and his team will create cerebellar organoids or mini-brains from induced pluripotent stem cells (iPSCs) derived from A-T patients. The organoids offer the potential to create avatars of individual A-T patients which can then be screened with thousands of potential drugs or compounds. For further information, please watch the film at https://www.youtube.com/watch?v=46wWdQngUlo See more

19.01.2022 Our amazing Lil and family are participating in Youngcares The Bolt 2020. Its a fundraiser for the incredible and life-changing organisation. To support and sponsor our Lil and Youngcare click on link https://thebolt2020.everydayhero.com/au/lilliana

18.01.2022 Beautiful memories from AA Day 2017

18.01.2022 New toy - The Spillnot. Now I can carry my morning coffee outside #smallwins #independentwoman #lifesbetterwithcoffee #biglovetoinventor ataxiasuxbutgadgetsarecool

18.01.2022 Please read this message from Todd (Youngcare team member, pictured); words we all need to hear at the moment. Everything will be fine if you get coronaviru...s unless youre elderly or have a disability. Yes thats us. Time to change the messaging here for us crips who are constantly marginalised. However, this panic creates needless hurt and anxiousness for many people I know. So to the people with a disability who need this right now: Youre here. You are surviving. Doctors have probably told you at some point in your life that you wouldnt. You proved them wrong. Life can be tough, but you wake up every day and embrace challenges most people cant comprehend. Things might get scary, but thats ok. Dont buy into the lies that say your life is unimportant. Your life is important. You matter. Take extra care but dont let it defeat you. It will be ok. Even if people tell you it wont be. Show them that theyre wrong. Again.

15.01.2022 And here's Boxing Becky showing her usual determination..... #NeverGiveUp #AtaxiaTelangiectasia #MentalHealth

14.01.2022 Tomorrow, 3 December, is International Day of People with Disability. Sanctioned by the United Nations and supported by the Australian Government, there are loads of activities planned. To find something in your local area head to https://www.idpwd.com.au/events/calendar/

13.01.2022 It is with heavy hearts that we are advising you all of the passing of one of our members David Di Mascio on 11th November. David and his beautiful smile will be missed but never forgotten.

13.01.2022 So, having SCA sucks! But to keep positive and not be consumed by a looming, crippling depression vortex, I look for small wins everyday. Theyre moments wher...e you do a little air punch yes or mentally high-five yourself. For example, Ive been frustratingly persevering with puzzles - slowly and shakily putting pieces together, not knowing if Im aiding my fine motor skills or aiding ataxia progression. Anyway, the other day the buttons on my shirt were undone and usually I have to get my husband to do them up but I thought Id try it. Totally nailed it - not a problem. It definitely called for a yes air grab. My question is, do others do this? Id love to hear your little wins and if that vortex is ebbing closer, I am encouraging you to try this and see if it helps in any way. #ataxiasucks #smallwins #hope #positivementalattitude #ificandoit See more

12.01.2022 Selma Blair reminds us all what true human resilience looks like.

12.01.2022 Can you imagine being 27 and forced to leave your family and live in aged care? This was a reality that sisters Sam and Jamie were facing. At 25 and 27 years o...f age the girls were facing an uncertain future living with people far beyond their age due to a lack of appropriate housing solutions. Sam and Jamie were lucky, and through donations from generous supporters were able to move into a place to call home: their Youngcare apartment. You can help others: buy a brick, and help build a home for young people with high care needs www.brickbybrick.youngcare.com.au

11.01.2022 My husband Garry is EziWay Kitchens and Bathrooms. Located in SE Qld (Brisbane-ish area). He's done a few NDIS home mods through a local Occ Therapist. She has told us recently finding reliable builders is proving to be a bit difficult. Being married to me with SCA, Garry is aware of the frustrations we face and therefore has a better attitude. If your occ therapist is having trouble they can contact Garry on [email protected]. If you have found good....anything, or anyone you'd recommend, please feel free to put on here.

09.01.2022 Tune in to hear fara Ambassador Sam Dwyer chat to Dakota in our Living with FA series

08.01.2022 We are having a meeting! Saturday 21 September 2019 PCYC Carindale ... 27 Narracott Street, Carina Qld 4152 10 am start Gold Coin donation to cover room hire and catering. Guest Speaker: Greg O'Donnell Greg has a wealth of knowledge on NDIS as he has done over 200 plans and many reviews, but more importantly, he has family with SCA7. With his abundant experience and involvement, we are fortunate and grateful to have such a guest willing to share his knowledge with us. Looking forward to seeing you there. For more info on Greg please read other post.

07.01.2022 The Clinical Research Consortium for the Study of Cerebellar Ataxia (CRC-SCA) is having their annual meeting here in Minneapolis this week. They're working hard... to prepare the Ataxia community (researchers, clinicians, patients, and pharma) for successful clinical trials. We're proud to help coordinate these efforts and are excited for what the future holds. See more

07.01.2022 My beautifully positive and enthusiastic Physical Therapist Andi @andi_fitness_goldcoast forced a reluctant me to go to the beach, something I never thought I...’d do again. Normal people see a beautiful scene. Us ataxian’s see a balance nightmare. With Andi holding one arm and my amazing superstar friend Chelsea @ilovesamsara holding my other we ventured across stupid soft sand to the mean tidal water. Once there my negativity melted away and I remembered how lovely the beach is. My legs were burning, it was sooo difficult and my knuckles were permanently white from hanging on to Chels and Andi for grim death but oh, it was so worth it. Afterwards we went to a cafe for breakfast and Andi explained how this was so important for our ataxian’s mental health/attitude. Instead of getting caught up in what we can’t do, we need to find ways to still do the things we enjoyed before. She also explained how this was applying therapy exercises done in the gym to real life. I can go to the beach!! I did it! And I can’t wait to go again. Thank you Andi for taking time out of your weekend to work. Thank you Chels for literally being my rock. #youcandoit #lifesnotover #ataxiasucksbutthebeachdoesnt #powerofpositivity #supportiveawesomefriends #lookingglamourousisnotanoptionanymore See more

06.01.2022 For your information thanks Lil

06.01.2022 Interesting information for you all

06.01.2022 Hi I’m 39, with SCA1 and have had symptoms for about 10 years. I’ve seen many physios and have always been discouraged, disappointed and deflated by them. ...They all have given me the same exercises as for a Stroke victim. Then I was introduced to Andi recently - I have finally found someone who is genuinely interested in helping. This is me, doing a balance exercise, with a 4 kilogram (I don’t know pounds lol) bar. Something physios have NEVER got me to do. As we all know, exercise is important so if you’re having trouble finding someone, keep searching and trying. Andi is Hungarian- I highly recommend finding a Hungarian therapist!! See more

06.01.2022 Today is International Ataxia Awareness Day! Here are some photos of previous years!

05.01.2022 Today is a special day: International Ataxia Awareness Day! Its important today to globally raise awareness on the rare disease and spread the word. Youngcare ...residents and advocates, Sam and Jamie-Lee (the stars of the recent Brick By Brick campaign!) have Friedreich Ataxia, one of many forms of Ataxia. The sisters are doing wonderful work with Friedreich Ataxia Research Association (@faraaustralia) to spread the word with hope to one day find a cure. See more

05.01.2022 I'm not sure if this is old news but I had this saved.

02.01.2022 Info about guest speaker Greg O'Donnell for meeting on Saturday 21 Sept Greg has a wealth of knowledge on NDIS as he has done over 200 plans and many reviews but more importantly he also has family with SCA7. ... Greg is willing to assist us in whatever way possible either personally or through his organisation www.uniteddisability.com.au He has also contacted NDIS to find out how members over 65 years of age with a disability can be assisted.