Brain Tumour Alliance Australia (BTAA) in Canberra, Australian Capital Territory | Non-profit organisation

Brain Tumour Alliance Australia (BTAA)

Locality: Canberra, Australian Capital Territory

Phone: +61 1800 857 221

Address: SHOUT, Building 1, 1 Collett Place 2607 Canberra, ACT, Australia

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

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• Non-profit organisation
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25.01.2022 We don’t develop courage by being happy every day. We develop it by surviving difficult times and challenging adversity. Barbara De Angelis If you or someone you know needs support with a brain tumour diagnosis, please visit our website here: https://bit.ly/3rRi5SH... #BTAA #BrainTumours #BrainCancer

24.01.2022 Useful reposting.

24.01.2022 You can find our new information booklet 'Brain Tumour It's Ok to Ask' Booklet on our website http://www.btaa.org.au They are available in various languages, including Chinese, Hindi, Arabic and Italian. A great resource to record and ask questions for patients currently undergoing treatment and seeking information from there doctors ... https://www.btaa.org.au//It_s_OK_to_Ask_BTAA_Booklet_v5.pdf

23.01.2022 What an awesome effort RCD have achieved during Covid and lockdowns etc help support this great cause

23.01.2022 https://actcancer.org//caring-for-the-carer-testing-an-on/

23.01.2022 The Brain Cancer 2020 Summit is a tumour-specific forum hosted by Victorian Tumour Summits in collaboration with the Department of Health and Human Services, Victorian Integrated Cancer Services, and Cancer Council Victoria Clinical Network. Key Consumer Recommendations: - Ask us about what we want to hear and make changes to your way of giving us information.... - Understand that many of these conversations are important moments in our lives and give us some time. Let us ask questions, give us straight answers or point us in the direction of people who can. - Find a better way to share information between health services. Private to public or metro to regional View video here: https://bit.ly/32Nxp8e #BrainCancer2020 #BrainTumourAwareness

22.01.2022 NDIS change in policy informed by advice from Sarah Mamalai

20.01.2022 Consumer Health Forum (CHF) webinar will be discussing how better communication between patient and clinician delivers better health outcomes. ://chf.org.au/civicrm/mailing/view?reset=1&id=59867

20.01.2022 Growing demand from cancer sufferers seeking out treatment ‘on par’ with Melbourne has forced an Albury-Wodonga facility to fast-track upgrades to patient accommodation. A unit connected to the Albury Wodonga Regional Cancer Centre which services an area with the highest rates of cancer survival in regional Victoria will offer more rooms for patients and their families. The Fight Cancer Foundation, which operates Hilltop Accommodation Centre, said the fast-tracked $3.8m... development is due to a rise in people specifically seeking treatment at the high-level cancer centre. The importance of the Regional Cancer Centre, you can’t understate, Fight Cancer chief Eric Wright said. The feeding towns are from about 200km around Albury-Wodonga and those people coming in from remote towns need a place to stay. To stay at a motel it could be $150 a night minimum, whereas people can stay here for $15 per night. Learn more about Hilltop Accommodation Centre here: https://bit.ly/3cuiRi7

20.01.2022 Update: All our love to Sarah and her boys and our thoughts are with them all. Her husband Oscar passed away over the weekend after a sudden brain aneurism a fews days earlier. Sarah was diagnosed in 2007 and Oscar supported Sarah and her friends who have worked so hard for our cause. Many in our community of Canberra and the wider brain tumour community will miss him terribly. Thank you Oscar from the founders and current executive of BTAA.

20.01.2022 Medicinal cannabis has been shown to make a difference for cancer patients to relieve the side-effects of chemotherapy. Early results of a landmark trial involving 80 patients at the Chris O'Brien Lifehouse hospital show that cannabis capsules were better than placebo at improving symptoms." https://www.9news.com.au//f40afb10-a8b1-4dc2-b2fa-a80efcdf

19.01.2022 Some excellent zoom sessions from Peace of Mind for people, including those living with BTs, carers and bereaved.

18.01.2022 Clinical Trials in development - NUTMEG A randomised phase II study of nivolumab and temozolomide vs. temozolomide alone in newly diagnosed elderly patients with glioblastoma (NUTMEG) Recruiting now at Royal Adelaide Hospital more details email : [email protected]

18.01.2022 Presentation on Advances in Meningiomas from last years Brain Cancer Patient Education and Support Forum October 2919 - in conjunction with the 12th COGNO Annual Scientific Meeting. A presentation on Advances in Meningiomas By Helen Shih :- https://btaa.org.au//Patient%20Forum%2027.10.19%20-%203%20

18.01.2022 I have an inoperable brain tumour and this diagnosis means my condition is terminal. Maybe not in the immediate short term but in the not too distant future" - Diane, BTAA member living with a brain tumour during COVID19. Click to read Diane's story here: https://bit.ly/3lJkRpe #BrainTumours #BrainCancer #PatientExperience

18.01.2022 Researchers from the University of Michigan report they have developed a new synthetic protein nanoparticle capable of passing through the nearly impermeable blood-brain barrier (BBB) in mice that could deliver cancer-killing drugs directly to malignant brain tumors. #BrainCancer #Glioblastoma

17.01.2022 ALL BRAIN TUMOURS MATTER - Low-grade tumours aren’t classified as cancer but can still cause high morbidity and loss of life. BTAA provides support and information nationally across Australia to brain tumour patients, their families and carers.... Visit our website to learn more here: https://bit.ly/33QvGzx #BrainTumours #BrainCancer

16.01.2022 Medical and Scientific: AI breakthrough in brain cancer diagnosis The treatment and diagnosis of brain cancer is being revolutionised by Australian researchers using artificial intelligence to take more accurate images of the brain, in the hopes it will speed up diagnosis and eliminate unnecessary surgery. Royal Australian College of Surgeons fellow Antonio Di Ieva and his team at Sydney’s Macquarie University are the first in the country to use the technology and a magnetic ...resonance technique called 2HG-Magnetic Resonance Spectroscopy. The technologies analyse surgical samples and identify a genetic mutation that allows doctors to confirm the diagnosis of the type of glioma the most common primary brain tumours. The mutation, which can be identified only by performing a brain tumour biopsy, allows doctors to determine whether a patient has long or short survival prospects. #BrainCancer #BrainTumours

16.01.2022 Clinical Trials in development - VERTU Veliparib Radiotherapy and Temozolomide MGMT Glioblastoma This study aims to develop a new treatment for glioblastoma (GBM), by finding out whether giving veliparib (an oral PARPi inhibitor drug) in combination with radiotherapy and follow up chemotherapy will improve the outcome of patients with unmethylated MGMT glioblastoma (GBM). The study will also find out how long the GBM responds to this treatment, the side effects of the treatment and the effect on quality of life.

15.01.2022 Peace of Mind's Annual Family Retreat info. Consider attending.

15.01.2022 Webinar: Exploring Targeted Therapies in Pediatric Brain Tumors Join the Pediatric Brain Tumor Foundation on Wednesday, March 24 at 1 p.m. ET/10 a.m. PT for Exploring Targeted Therapies in Pediatric Brain Tumors, a presentation by Dr. Jason Fangusaro, Director of Developmental Therapeutics and Medical Director of the Clinical Research Office at the Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta. #BrainTumours #ChildhoodCancer

15.01.2022 Need to learn more about brain tumours? BTAA provides a comprehensive list of websites, factsheets, and booklets that provide useful information for newly diagnosed persons, their families, and carers. We also provide an Australian wide support line (1800 857 221)... Visit our website here: https://bit.ly/35o7Gnj #BrainCancer #BrainTumours

15.01.2022 Whats happening to your brain under lockdown? https://www.abc.net.au//2020-09-02/your-brain-und/12611994

15.01.2022 A national online forum.

15.01.2022 Want to talk to someone whos been on this Brain Tumour journey ..We offer peer support, not medical advice, and have a Support service with a freecall number (1800 857 221 - available in Australia only) where you can speak to someone who knows what it is like to travel the brain tumour journey. It is important to be aware that this number is answered by a coordinator who then contacts the on-call BTAA member to return your call as soon as possible. Please consult your medical practitioner for medical advice. We are unable to offer financial or material support.

14.01.2022 Researchers from the University of South Australia have developed a new drug called Auceliciclib for the treatment of glioblastoma and expect human clinical trials to begin later this year. #BrainCancer #Glioblastoma #BTAA

14.01.2022 Useful resource.

14.01.2022 Very interesting side effects of meningiomas from a large study.

13.01.2022 Brain Cancer 2020 Summit 2020 - Collective consumer experience of what it's like to be diagnosed with a brain tumour in Victoria: Key themes are communication, coordination and collaboration. View video here >> https://bit.ly/38E3umS #BrainTumourAwareness #BrainCancer

13.01.2022 On Professor Kate Drummond: "Her appointment on the University of Melbourne Academic Board is a reflection of her passion in advancing neuroscience research and education" | Congratulations Kate! Another achievement and contribution | #thankyou #rmh #neurosciencefoundation https://www.thermh.org.au//rmh-neurosurgeon-appointed-univ

13.01.2022 CONNORS RUN COUNTDOWN Only two more sleeps until September. And today its all about YOU, our participants. Were so thankful to everyone who has registered,... despite it being a completely different event this year. The silver lining is you can do Connors Run your way any day, anywhere! And we guarantee well make it a month full of fun. Go to connorsrun.com to join nearly 3000 others who may be running/walking/swimming/golfing, their way in September

13.01.2022 THANK YOU Denis Strangman (Co-founder BTAA and The International Brain Tumour Alliance) for your continued support to the brain tumour community... both at home in Australia and internationally! Congratulations on being a proud winner of BTAA's online raffle this year! Wishing you and your loved ones health and happiness for 2021 #BrainTumors #BrainCancer

12.01.2022 BTAA assists people living with brain tumours in Australia to navigate local patient support in their geographical area. Visit our website to find out more about support organisations in your State here: https://bit.ly/2IkfG1g #BrainTumours #BrainCancer #PatientExperience

12.01.2022 Always great to hear new research this time navigating the blood brain barrier :- https://medicalxpress.com//2020-07-drug-delivery-particles

12.01.2022 Good ideas for helping a friend.

11.01.2022 Looking for brain tumour information and support? Explore our website (https://.btaa.org.au), peruse our magazine (https://btaa.org.au///BTAA%20Magazine%20October%202019.pdf), or subscribe to enjoy our e-News (https://btaa.org.au/index.php/user/register).

11.01.2022 Thanks to BCNA for putting together a summary of info to help patients during the Coronavirus pandemic. About Telehealth and more. https://myjourney.org.au/article/3175

10.01.2022 Brain tumours attack the very essence of who we are, our thoughts, our emotions, our behaviour and our personality! Visit our website for support and information about brain tumours here: https://bit.ly/37cWjki... #BrainTumours #BrainCancer #PatientExperience

10.01.2022 Living with a brain tumour can cause financial toxicity due to taking time off work, treatment and transport expenses. The BTAA provides a range of information & resources to help patients and carers access financial support. Visit the BTAA website here: https://bit.ly/3rVxUHS... #BTAA #BrainTumours #BrainCancer #FinancialToxicity

10.01.2022 Slaters mum and Aunty look after this dear little chap. Tough reading.

10.01.2022 Our Chair Catherine this morning. Her husband Bill was a fabulous support to his country, family and to BTAA. He sat through a lot of committee meetings and folded and posted many of our newsletters over many years. We remember all our service men and woman today, a strange but moving Anzac Day.

10.01.2022 Childhood ependymoma is a disease in which malignant (cancer) cells form in the tissues of the brain and spinal cord. Learn about ependymoma, including symptoms and treatment here: https://bit.ly/2Y2QLDP... #ependymoma #BrainCancer #ChildhoodCancer

09.01.2022 Peace of Mind retreats update and Zoom options.

08.01.2022 I’ve worked in this field for more than 10 years and I’ve not seen anything like this. While this brilliant new research has only been tested in mice, a new n...anoparticle, recently discovered by researchers at the University of Michigan, has been shown to easily bypass the blood-brain barrier, which has stopped many proven anti-cancer drugs from reaching the brain. Researchers hope this could one day lead to new clinical therapies for treating glioblastoma. Excitingly, the study found that blocking a protein known as STAT3 in glioblastoma, reactivated the immune system against the tumour with profound effects. The mice in the the trial experienced no tumour recurrence as their immune system defeated the brain cancer. This occurred without any additional therapeutic drugs or other clinical treatments. "It's still a bit of a miracle to us," said Joerg Lahann, the Wolfgang Pauli Collegiate Professor of Chemical Engineering and a co-senior author of the study. "Where we would expect to see some levels of tumour growth, they just didn't form when we rechallenged the mice. I've worked in this field for more than 10 years and have not seen anything like this." This early research suggest that the combination of therapeutic drugs and novel nanoparticle delivery not only eradicates glioblastoma tumours in mice but results in immunological memory the immune system’s ability the recognise and attack remaining malignant cancer cells. "This is a huge step toward clinical implementation," said Maria Castro, the R.C. Schneider Collegiate Professor of Neurosurgery and a co-senior author of the study. "This is the first study to demonstrate the ability to deliver therapeutic drugs systemically, or intravenously, that can also cross the blood-brain barrier to reach tumours,", Prof Castro said of the nanomedicine.

06.01.2022 Support Australian Brain Tumour Patients and win one of 6 beautiful handmade quilts! Big shout out to Rosewood Craft And Quilters (RCQ) who have kindly donated six beautiful quilts to BTAA to help our fundraising. BTAA is grateful to the skillful and generous quilters at RCQ, in particular, Wendy Quinton. We are offering these lovely quilts as prizes in a COVID safe online raffle. ... To buy a ticket and support the work of BTAA click here: https://bit.ly/2SYcvOz #braintumourawareness

06.01.2022 BTAA booklet, "It's Okay to Ask" was developed by people with brain tumours, their families, doctors and nurses, and includes key information to help newly diagnosed brain tumor patients get the information and support they need. Get your free copy here: https://bit.ly/36NdrwL #BrainTumours #BrainCancer #ItsOkayToAsk #PatientExperience

06.01.2022 Can you help us to continue providing Australian brain tumour patients, their families and carers access to peer support, information resources and referrals to the most appropriate support services in their area? Rosewood Craft And Quilters (RCQ) have donated six beautiful quilts to BTAA to help our fundraising. BTAA is grateful to the skilful and generous quilters at RCQ, particularly Wendy Quinton. We are offering these lovely quilts as prizes in a COVID safe online raffle... for their donation of 6 beautiful quilts. Please visit our website to learn more: #BrainCancer #BrainTumourAwareness

04.01.2022 https://www.facebook.com/107787018440/posts/10157454543398441/?vh=e&d=n

04.01.2022 Dear BTAA Subscriber, We have the opportunity in Australia to participate in a world wide survey about the impact of COVID-19. The survey can be accessed on the link below. You will need to answer the first question (whether you are a Patient or a Carer) to be able to continue https://www.research.net/r/theibta The deadline for completing the survey is 30th April 2020.... This survey covers adults, children and caregivers and aims to capture the concerns and challenges facing brain tumour patients and caregivers at this very difficult time. The survey is available in seven languages and we hope that it will provide a data source to help us all identify where there is greatest need. The survey is part of the Society for Neuro-Oncologys (SNO) COVID-19 Task Force work and it has been developed by the International Brain Tumour Alliance (IBTA). Here is a universal link to the English version of the survey with the option available on the landing page (upper right corner) to select one of six other languages as well as English: https://www.research.net/r/theibta Below are also the direct links to the survey in French, German, Italian, Japanese, Polish and Spanish without landing on the English version first. French: https://www.research.net/r/theibta?lang=fr German: https://www.research.net/r/theibta?lang=de Italian: https://www.research.net/r/theibta?lang=it Japanese: https://www.research.net/r/theibta?lang=ja Polish: https://www.research.net/r/theibta?lang=pl Spanish: https://www.research.net/r/theibta?lang=es We will publish the results in the BTAA e-News when they are available. We at BTAA would really encourage you to take part in the survey. Thank you for participating Catherine Hindson Chair BTAA 0412041245

04.01.2022 A pituitary adenoma is an adult tumour that develops from the tissue of the pituitary gland and controls other glands within the body that in turn control many of the body's functions. To learn more please click here: https://bit.ly/2Na5OcA #BrainTumourThursday #BrainTumours

04.01.2022 Did you know that when you subscribe or join BTAA as a Member, you are able to select from the following three documents in hard copy format as part of your Welcome Pack. You can click on any of the respective hyperlinks and download them if you do not require a hard copy. Link to Primer https://2knaef3o0jpz4ff42k23tr6l-wpengine.netdna-ssl.com// Pediatric Brain Tumour Handbook - (The handbook has been developed by the Brain Tumour Foundation of Canada and is customised for ...families with a child diagnosed with a brain tumour) Link to Pediatric Handbook https://btaa.org.au//3-Pediatric_Patient_Resource_Handbook Meningioma - (American Brain Tumor Association) Link to meningiomas https://www.abta.org//uplo/2018/03/meningioma-brochure.pdf

03.01.2022 You can find our new information resources 'Brain Tumour Pathway' and 'It's Ok to Ask' Booklet on our website http://www.btaa.org.au They are available in various languages, including Chinese, Hindi, Arabic and Italian.

03.01.2022 Possible Signs of a Brain Tumour 1. Seizures: If you have a fit or a seizure out of the blue, you should go to A&E, where an urgent brain scan would be considered. 2. Weakness of the face/arm/leg on one side of the body: Such weakness may come on suddenly, like a stroke, or may become more noticeable gradually over a few weeks, for example dragging your leg or tripping over kerbs because you don’t seem to be able to lift your foot up properly.... 3. Marked speech disturbance: Slurred speech, being unable to find your words or coming out with the wrong words. Struggling to find a word sometimes is normal; but it would become worrying for a brain tumour if it was becoming steadily worse over a period of weeks or months and was associated with other symptoms. 4. Personality change: People who have a brain tumour may become steadily more withdrawn or confused over a period of a few months, or struggle with tasks they used to be able to do, such as playing an instrument or doing internet banking. 5. Vision changes Sometimes, tumours in the brain reduce our ability to see objects to one side. This might cause people to bump into doorframes, not be able to see someone sitting on the left or right side, or clip the wing mirrors of parked cars if driving. If you’re concerned about vision changes, begin by seeing an optician, who can perform a full eye test and refer you to hospital if necessary. 6. Difficulty reading or interpreting words: You may notice that over a few weeks, you’re increasingly struggling to write emails or send texts, or to work out what subtitles or words in a book say you may be able to see the words clearly, but the brain refuses to interpret them or make sense of them. 7. Headaches: Headaches are the symptom most people associate with brain tumours, but it’s actually relatively unusual for headache to be the only symptom of a brain tumour. When it comes to being concerned about brain tumours, doctors talk about ‘headache plus’, meaning headache plus other symptoms. Worrying headaches are those which have become ‘clearly, definitely and progressively worse’ over a period of two to three months, and which become associated with some of the other symptoms. Remember, none of these automatically mean you have a brain tumour, but if you are concerned, see your GP. McBain outlines seven possible symptoms which may be linked to brain tumours Prompt diagnosis can save lives! #BTAA #BrainTumours #BrainCancer

01.01.2022 Symptoms of brain cancer may be hard to recognise! Brain cancer can cause a variety of neurological symptoms, as well as systemic (whole body) effects. Brain cancer may develop gradually, without any noticeable signs or with minimal symptoms, and it may suddenly cause severe, rapidly worsening effects. The signs of a brain tumor often correspond to its location in the brain. Learn more about signs and symptoms of brain cancer here:... https://bit.ly/3a1f6R8 #BTAA #BrainCancer #BrainTumours