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December 2018 e-News

December 15, 2018
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BTAA Support Line Number 1800 857 221

Welcome to the Brain Tumour Alliance Australia (BTAA) e-News
(December 2018)

December's e-News kicks off with a research paper from those amazing people at BRAINSTORM, the first in a series. We also have the long awaited Federal Government response to the 2017 SENATE INQUIRY, some great news from the Robert Connor Dawes Foundation and their recent CONNOR'S RUN, an opportunity to join a Low Grade Glioma Registry and information from the WALTER & ELIZA HALL INSTITUTE on some Genome Sequencing Research and Clinical Trials. To counter the heavy reading material, we have added a lighter touch by including some favourite recipes from some BTAA Committee members and friends, for those of us looking for meal ideas during the Christmas period. We have also included a review of a big year for our Sydney Support Group. To finish off we have a small tribute to two people very dear to us who are no longer with us.

Brainstorm Research
We are beginning a series publishing some findings from our good friends at Brainstorm at RPA. Whilst the information is quite scientific and perhaps a little dry and heavy going for many of us, we think it important to make this research available to a wider audience and to acknowledge their work. They are amazing people doing outstanding work in finding a cure. 

This study showed that glioblastoma cells release tiny, virus-sized particles that are full of cancer molecules and information. These tiny cancer particles are captured by normal brain cells causing them to transform in a way that supports glioblastoma invasion and expansion. This work sheds light on how glioblastoma tumours invade the brain so diffusely and aggressively.

Fundamental scientific studies are essential to further our understanding of how glioblastoma tumours hijack the brain and importantly, provide new insight into how we can reclaim control back from these fatal tumours.

Read on if you're game.
 
Read or Download the Research Paper
Visit the Brainstorm Facebook page

Government Response
...to Low Survival Rate Cancer Senate Enquiry

The long awaited Federal Government response to the Senate Inquiry into Cancers with Low Survival Rates has been released - for those interested in wading through committee recommendations.
 
BTAA made a series of submissions to the Inquiry.
 
Read or Download the Report

Genomic Sequencing offers new hope for Rare Cancer sufferers
Better approaches to diagnosing and treating rare cancers are urgently needed, said Professor Clare Scott, who is leading the trial that uses genomics to match people with rare cancers to better treatments, “more people die from rare cancers in Australia than any other single cancer type. This is because treatments for many rare cancers have not advanced at the same pace as treatments for more common cancers." Brain Cancer is included in this trial. We are including links to other articles, that although over 12 months old, provide good information. You can access these articles at the following links - Bringing Brain Cancer into Focus and Funding to help Fight Brain Cancer with Immunotherapy.

We will continue to provide updates from the Walter + Eliza Hall Institute as they come to hand.
Read More...

Connor's Run
The Robert Connor Dawes Foundation broke records with this year's Connor's Run, with 5,000 plus participants, 650 volunteers and more than $1 Million raised. Great work from the RCD Foundation. Congratulations!
Read More...

Low Grade Glioma Registry
Information on a Low Grade Glioma Registry that you may be interested in. There is also a video talking about Low Grade Glioma's in general. Both videos are about 3 minutes long. It also talks about the benefits of things such as diet and exercise in maintaining and improving Quality of Life. Interesting viewing even if you don't join the Registry.

Some BTAA friends have registered for this trial and it may benefit some subscribers.
 
Watch the Video...
Register for the Study

Targeting Glioma Initiating Cells
The subject of medicinal cannabis has created a lot of interest in recent editions of the e-News, one a first hand account and the other an upcoming trial in Australia. It appears to be a subject that won't go away and so again this month we are including, with a slightly different emphasis, a study from the U.S National Library of Medicine. It's a study about the targeting of Glioma initiating cells with a combined therapy of cannabinoids and temozolomide.
Read More

The Common Thread of Loneliness
We recognise that the Christmas period, as well as being, for many people, a sacred time and a time for families and friends to get together, can also be, for many, a time of great loneliness. This is a post written earlier this year by e-News Editor, Stephen Newman, as he tried to tackle the subject of loneliness.

Regardless of the support that we may have at hand, being told that one has a brain tumour is an isolating experience and we need others to bring us reassurance that we are not alone in this journey.
Read More...

Food for Christmas, for Family & Friends, for Life.
Food is the staff of life and so we thought what better way to support each other, particularly at this time of the year, if we can't physically drop meals around, than by sharing some recipes that you might find handy and, hopefully, nourishing. Most of us have either been beneficiaries of this kindness or we've delivered these priceless gifts, or both. It's all part of providing each other support.

We hope there is something in there to tempt you. The recipes are presented in PDF format so that you can save it and print it out for the kitchen.
  Bon Appétit
Get the Recipes

Sydney Support Group - Year in Review
It's been a big year at the Sydney Support Group, with new members inspiring old ones and much progress being made. We also found it entirely appropriate, as well as presenting our year in review, to honour those dear friends of the group who are no longer with us. They remain part of our family. 

If you are part of a support group there may be some ideas here, feel free to use them. All of us at the Sydney Support Group would like to encourage anyone who might be thinking they'd like to start a support group by saying "you can do it". 
Read the Year in Review

Vale Angie & Rigoula
The BTAA family has lost two very beautiful people recently and we would very much like to honour them here.

Angie Childs

27-04-1974 to 27-10-2018
On the 27th October we at BTAA were deeply saddened to hear that Angie, the daughter of our colleague and committee member Pam Hubner, had lost her 8 year battle with brain cancer.
 
Angie Child was a beautiful woman of 44 years with a loving husband Steel, three lovely children, 11 year old twins Bella & Zach, and 10 year old Ryder.  She was supported by her wonderful family.
 
Throughout Angie’s journey, Pam never stopped searching the world for information for the latest treatments that would give Angie more time. She never stopped asking questions or seeking a second opinion and was and remains an inspiration to BTAA and to the wider brain tumour community.
 
We extend our deepest sympathy to Pam and her family.

Rigoula Roussakis

25-03-1969 to 04-12-2018
On Saturday 8th December we farewelled a beautiful woman, friend and committee member, Rigoula (Rigs) Roussakis.

After a 16 year battle with Brain Cancer which she fought with dignity and grace, the tumour reoccurred again 12 months ago, following a routine MRI which showed that the cancer had become aggressive and she lost the fight to this disease. Her commitment and dedication to her daughter, Christiana and her family was second to none.

Rigs was very involved in the Brain Tumour community and was on in many forums and committees including the Brain Tumour Alliance Australia (BTAA), the BTAA Cancer Australia Project,  the Consumers Health Forum (CHF), the NPS Medicine Wise Advisory Group, annual COGNO Scientific Meetings, and, the Cancer Council Victoria (CCV) - advocacy for Low Survival Cancers Alliance.
 
Throughout her Brain Tumour journey Rigs never let the journey define her - she had a positive outlook and was always willing to help and assist others.
 
Rigs will be sadly missed by all who have had the pleasure of knowing her.

Rigs always showed grace through adversity. 

We all have an empty void in our hearts. Rigs you are greatly admired.

We have reproduced here, Rigoula's Story from the May 2014 edition of the BTAA Brain Cancer Action Week Magazine.

IBTA e-News
Don't forget the International Brain Tumour Alliance e-News.
Find out more at the IBTA website
Read the IBTA e-News...
IT IS, AFTER ALL, CHRISTMAS 
 
We would just like to wish you all a SAFE, RESTFUL, HEALTHY and HAPPY Christmas, no matter how you spend it and who you spend it with.
DISCLAIMER*: The material provided in this e-newsletter and on our website is general in nature. It is made available on the understanding that BTAA is not engaged in rendering professional or medical advice. Before relying on the material users should carefully evaluate its currency, completeness and relevance for their purposes, and should always obtain appropriate medical advice relevant to their particular circumstances.
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