Batten Disease Support & Research Association Australia in Shelly Beach | Community organisation

Batten Disease Support & Research Association Australia

Locality: Shelly Beach

Phone: +61 475 428 691

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• Non-profit organisation
• Community organisation

25.01.2022 CBD Treatment Found Effective for Severe Seizures in Batten Disease - A Case Study Cannabinoids were used to successfully treat seizures in a patient with Batten disease for whom conventional therapies alone failed, according to a case report, suggesting that cannabinoids should be investigated further as a possible seizure treatment. The report, Successful treatment of cannabinoid administration against refractory epilepsy in Batten disease: a case report, describes the case of a 25-year-old male with Batten disease, who was admitted to a hospital in Cyprus for severe seizure activity. It was published in the journal Neurological Sciences. For more information, go to https://battendiseasenews.com//cbd-treatment-found-effect/

25.01.2022 ASX Charity Trading Day - Thursday 26th November 2020 We are thrilled to announce that BDSRA will be one of the charitable beneficiaries of the first industry wide ASX charity trading day! ASX has pledged to donate 100% of the funds received on the day from cash market trading, and nabtrade has pledged to donate 100% of brokerage raised that day. The inaugural Australian Markets Trading Day for Charity will be an Australian first across multiple asset classes - with numerous... institutions pulling together at the same time to help many charities who are doing it tough in these difficult times. The fundraising day will start with the Ringing of the Opening Bell by Brooke Corte (Host of Money News on 2GB, 3AW, 4BC and 2CC) at a breakfast ceremony at the ASX hosted by Dominic Stevens (ASX Managing Director and CEO). To find out more, visit: http://www.asxrefinitivcharity.com.au/view_event/4 Want to be part of the celebration? Join via Livestream as they ring the bell to start the day, register https://www2.asx.com.au///asx-refinitiv-charity-foundation Benefiting Charities include Rural Aid, Stand Tall and Mito Foundation and The Australian Chapter of the BDSRA. If you would like to support or promote the event please contact [email protected] 0412411366

21.01.2022 *NEW* Clinical trial resources for families! In response to recent enquiries and discussions, we have created a new 'Clinical trials resources' section on the Resources page of the BDSRA Australia website. Here you will find a downloadable 'Clinical trial resources for families' brochure with useful information on the clinical trial process, understanding key clinical trial terms and definitions, and how to stay up-to-date on latest clinical trial news. There is also a short video tutorial 'How to search for clinical trials' in the 'ClinicalTrials.gov' global database, presented by our Head of Medical & Scientific Affairs and Head of Research, Dr Ineka Whiteman. To access these resources go to: https://bdsraaustralia.org/resources We hope you find these useful!

16.01.2022 Amicus Gene Therapy Effective After 2 Years in CLN6 Batten Children, Interim Results Show Amicus Therapeutics‘ investigational gene therapy AT-GTX-501 stabilized motor and language function in children with variant late infantile neuronal ceroid lipofuscinosis 6 disease (CLN6 disease) two years after treatment, according to interim data from a Phase 1/2 clinical trial. Read more here: https://battendiseasenews.com//at-gtx-501-effective-after-

14.01.2022 Dear Families Zoom: Virtual Coffee and chat with Dementia Support Australia Wednesday 2nd December 2020, at 11am (AEST)... Join us for this exciting opportunity to hear from Heidi Dowse, Service Manager for The Dementia Centre at HammondCare and team leader for the Batten Disease & Childhood Dementia consultant team at Dementia Support Australia (DSA), and fellow DSA team leader Dr Sarah Elder. As part of an ongoing collaboration through 2020, BDSRA Australia have provided DSA with specialised training in Batten disease and childhood dementia. This trained team of consultants are now equipped and ready to support our Batten disease families by providing assessments, individualised behaviour support management plans and advice to families and carers living with the often challenging behavioural aspects of Batten disease. Heidi and Sarah will discuss the services and support available to our families and will be ready to answer any questions you might have. To register, please RSVP: [email protected] to receive the ZOOM details. We look forward to seeing you there! In the meantime, make sure you follow them: https://www.facebook.com/childhooddementiainitiative ZOOM is a video conferencing platform and can be searched and downloaded onto either your smart phone, tablet, laptop or desktop computer. If you don't have a ZOOM account and would like some telephone support setting it up, please email Julie: [email protected]

13.01.2022 Reminder: **** Virtual Coffee Catch Up **** Our Virtual Coffee Catch Up with our new Family Support Officer, Jennifer Buchanan is coming up this weekend. If you're interested in attending this Zoom session, please email: [email protected] for the details of the Zoom invitation:... Saturday 17th October at 3pm

12.01.2022 Did you know Batten disease is one of the most common forms of childhood dementia? Check out the Childhood Dementia Initiative - a new project led by Megan Donnell to raise awareness and facilitate research into childhood dementia. Follow them on Facebook: https://www.facebook.com/childhooddementiainitiative

12.01.2022 We are delighted to extend an invitation on behalf of the Childhood Dementia Initiative, to attend an Expert Panel Discussion on childhood dementia in Australia on Wednesday 18 November at 12pm (AEDT). The Childhood Dementia Initiative is a new Australian-based global organisation - the first of its kind worldwide - that exists to drive research and advocacy to 'disrupt the impact' of childhood dementia worldwide. The Initiative has recently commissioned a report on the incid...ence, prevalence and cost of childhood dementia in Australia and will be discussing the findings of this report, the impact of childhood dementia on children and their families, and what needs to be done to urgently address the problem. To register for this free online event head to the event page: https://tinyurl.com/y28yw62l You can find out more about Childhood Dementia Initiative and donate at www.childhooddementia.org, and be sure to follows them on Facebook to keep up with any new developments: Follow them on Facebook: https://www.facebook.com/childhooddementiainitiative

11.01.2022 The latest NDIS Newsletter has been released: https://mailchi.mp//enewsletter_15_october2020_participant This edition contains valuable information on the following topics: *Open letter from our CEO... *Update: Extension of coronavirus supports *Guide to Plan Management *Carers Week *Supported Independent Living (SIL): consultation *A new Specialist Disability Accommodation (SDA) vacancy matching platform *National Counselling and Referral Service *Participant spotlight This is a valuable resource for our families - to stay up to date, please follow their Facebook page (https://www.facebook.com/NDISAus/) or subscribe to their monthly Newsletter (https://ndis.us6.list-manage.com/subscribe).

10.01.2022 What a honour it is that BDSRA Australia has been named recipient of the Country Women's Association of Victoria's Thanksgiving Fund for 2020!! It is with so much gratitude that we wish to thank the Victorian Branch of the CWA, firstly for the nomination, and secondly for the very generous donations totalling over $33,000 from their Thanksgiving Fund. It is just incredible to receive such a large donation especially during a time when it has been so difficult to fundraise. ...Please read our 'Thank You' letter and hear all about the history behind the CWA's Thanksgiving Fund, and how BDSRA came to be on their short list. Again, a heart felt and appreciative thank you to the Country Women's Association for your generous support. Country Women's Association of Australia

09.01.2022 We are absolutely thrilled to announce the ASX Refinitiv Charity Foundation raised a whopping $235,752 yesterday through their ASX Trading Day. As one of the charitable recipients of their fundraising efforts, BDSRA Australia would like to whole heartedly thank the ASX Refinitiv Charity Foundation for their generosity and continued support of BDSRA Australia. It was quite a rush looking on via video link and seeing all the hustle and bustle, and equally as exciting watc...hing the donations rise throughout the day! We also take this opportunity to remind you that tickets for the ASX Refinitiv Raffle are now on sale. There are some fantastic prizes up for grabs. Please follow the link below to buy tickets ... good luck everyone https://www.asxrcfau.com/console/rafflepages/2

05.01.2022 BDSRA - Annual General Meeting The Annual General Meeting of BDSRA Australia is being held via Zoom this Sunday 29th November 2020, at 11am. Family and friends are welcome to attend and hear about our activities over the past year, and the plans we have in store for the coming year. If you would like the Zoom details for this Sunday's AGM, please email [email protected]

03.01.2022 Reminder: The Childhood Dementia Initiative's Expert Panel Discussion on childhood dementia in Australia takes place tomorrow, Wednesday 18 November at 12pm (AEDT). To register for this free online event head to the event page: https://tinyurl.com/y28yw62l... You can find out more about Childhood Dementia Initiative and donate at www.childhooddementia.org, and be sure to follows them on Facebook to keep up with any new developments: Follow them on Facebook: https://www.facebook.com/childhooddementiainitiative

02.01.2022 We're hoping for a BIG day of trading on the Australian Stock Exchange today .... Why? Because BDSRA Australia are one of the charitable recipients of the "ASX Refinitiv Trading Day" happening right now! For today only, ASX has pledged to donate 100% of the funds received on the day from cash market trading, and nabtrade has pledged to donate 100% of brokerage raised today. As one of the recipients of those donated funds, we're hoping it's a good day to trade :-) You can track the donations throughout the day via this link: https://www2.asx.com.au/.../asx-refinitiv-charity-foundation We're hoping some of you got in on the excitement of the Ringing of the Opening Bell, but in case you missed it, we've got a short video below ....