Fibrolamellar Australia | Other
Fibrolamellar Australia
Reviews
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25.01.2022 An article claiming a small victory for those who believe in the use of Cannabis as a possible treatment for cancer! https://www.facebook.com/permalink.php
23.01.2022 We have a new fighter here in Australia. I thought it would be a great idea to share our resources so that when new fighters join the page can find doctors and oncologists with some experience and knowledge about this disease. My brother's doctors are based in Newcastle NSW. His specialist was Dr Stan Chen and his oncologist was Dr Andre Van der Westhuizen. They were fantastic and did everything thing they could. Most importantly they were willing to search for information beyond what they already knew. If it wasn't for them Peter would not have had the time he did. Highly recommend!
23.01.2022 Very exciting for all those fighting Fibrolamellar! For more information please sign up to the 'Fibrolamellars of the World Unite!' page. This page has everything from support to world leading specialists in this very rare cancer.
21.01.2022 https://www.gofundme.com/corinda-maloney-memorial-fund
19.01.2022 I've just put up a blog I wrote about 12 months ago. This was the beginning of the toughest part of my brother's journey yet and we're still going. I'll try and write more soon and bring things up to date with his fight. I'm having one of those 'It's not fair' days but I'd rather do something that might be useful than sit and dwell on it all. I hope everyone is well. http://fibrolamellaraustralia.blogspot.com.au/
18.01.2022 https://www.facebook.com/fibroregistry/videos/572537749606436/
14.01.2022 Do you have an upcoming surgery or biopsy? Are you interested in donating fresh tumor tissue? FCF has an exciting new partnership with the Broad Institute of MIT & Harvard and Pattern.org (an initiative of the Rare Cancer Research Foundation) which allows patients to donate excess fresh tumor tissue from surgery or biopsy to research. We’re working with these partners to create new rare cancer cell lines through the Broad’s "Cancer Cell Line Project" (CCLP). Only a limited ...number of indications are initially included in this project and fibrolamellar is included so we’re letting patients with upcoming resections or biopsies know about this exciting opportunity. Here’s how it works: Go to https://www.pattern.org/index#first-section Click on join us to view more information about the project. You’ll be asked to answer a few basic questions (i.e. name, phone number and diagnosis) Then you’ll be able to access details about the project. If you decide it’s right for you, you can sign an online consent to donate your excess tissue. That’s all you have to do as Pattern will work directly with your doctor, as well as the local pathologist to coordinate the contribution. Only excess fresh tissue not needed for your clinical care will be taken. Pattern.org will de-identify the tissue sample (which means they’ll remove all personal information) and have the sample transported directly to the Broad Institute for processing. There is NO cost to you. You’ll be notified once your tissue sample has been received at the Broad, but won’t receive any other information back from the project. The great news is that if a successful cell line model is created from a tissue sample, it will be genetically characterized and the cell line and corresponding de-identified data will be placed in the public domain providing access to qualified researchers throughout the world for use in their research. By doing so, this will provide an invaluable resource for researchers to better understand fibrolamellar and hopefully lead to science that contributes to the development of more effective treatments. https://www.facebook.com/FibroFoundation/posts/10154962630852489
13.01.2022 Hi everyone, Hoping all of you on here can share and help us spread further awareness of Fibrolamellar. This year raising funds for Camp Quality as they have pr...ovided wonderful experiences for Children and Families living with Cancer. We are hoping to get Gymnastics Australia on board to support Noah's brother Kye's Go4Gold Campaign during September Childhood Cancer Awareness Month . It would also be appreciated if you could print out the picture, paste it onto a money tin and put it in as many shops/ businesses/ sporting venues that would like to support this cause. If you are interested in helping and would like to add your fibro fighters name on the picture you can message me and I can edit them individually. At the end of September you can deposit into this gofund me account which all funds raised will be transferred to Camp Quality's bank account. Confirmation will be provided when funds have been transferred. All Fibrolamellar fighters are 1 in 5 Million. Please help #Noah1in5Million and let's do our part here in Australia to continue raising awareness of this Ultra Rare form of Liver Cancer. See more
12.01.2022 Could be interesting! https://www.facebook.com/7NewsPerth/videos/10153890864569072/
11.01.2022 Here is a link for a wonderful fibro mum in England and her link to raise funds for research into this awful disease. https://www.facebook.com/Teresa1606/posts/10208877404787245
07.01.2022 It is with a very heavy heart that I must let you all know that my brother lost his battle against this awful cancer on Christmas Eve, at home, with his family around him and best friend by his side. We will say our goodbyes tomorrow. This is not a reason to give up but to keep fighting. Peter had a lot of successes throughout his journey. He had 10 years since his first diagnosis; many of those cancer free. We are getting closer all the time to finding more effective treatm...ents. I will put up a list of all the treatments that showed success and doctors who helped him fight here in Australia. We will be forever grateful to the doctors and Nurses who helped him. I can't put into words how grateful we are to his favourite community nurse Moya and all the amazing services who helped look after Peter throughout his fight and who's assistance meant Peter was able to live his final days at home, with the people he loved most and never go back to hospital. Thank you all.
05.01.2022 It's World Rare Diseases Day. Here is a write up about Elana who, along with her father Sandy, work tirelessly to find ways to fight this disease. https://www.facebook.com//a.360833590619/812802518756063/
01.01.2022 https://www.facebook.com/FibroFoundation/posts/10155364540607489
