Chinese scientists publish promising findings on clinical trials involving Avasimibe, which has shown to inhibit tumour growth by targeting FoxM1-AKR1C1 in osteosarcoma
Chinese scientists publish promising findings on clinical trials involving Avasimibe, which has shown to inhibit tumour growth by targeting FoxM1-AKR1C1 in osteosarcoma
Those who know our family, know us as an AFL and rugby family, however those who truly knew Coop, also knew he was a passionate foundation supporter of the Melbourne Storm.
Cooper never wavered in his passion for the Storm, and loved nothing more than a spirited game of League – so long as his beloved Storm came out on top.
When the generous offer came from the NRL to host an intimate, invitation only Chairman’s dinner for 50 guests, it represented a superb opportunity to raise awareness and funding for sarcoma, whilst celebrating the game Cooper had come to love since he was a small boy.
After my first meeting at NRL HQ, I was simply in awe of the lengths all those I met, were willing to go to in order to assist CRBF in optimising this opportunity.
The can-do attitude filters from the top down at the NRL, and there is a culture which I found overwhelmingly refreshing. Each person I dealt with was truly accommodating, helpful and understanding. My requests were numerous, and I was never at any stage made to feel an annoyance, when each of these people were juggling the rigours of finals – their busiest and most intense time of the year.
Then there were the ‘Legends of League’. One can be forgiven for feeling a little apprehensive when dealing with an illustrious group of sportsmen, who represented some of the best players this sport has produced.
The absence of the often- present sense of entitlement which can accompany sportsmen of this stature, was a breath of fresh air. Wayne Pearce, Steve Roach, Steve Edge, Brad Fittler, Michael Ennis, Anthony Minichiello, Braith Anasta, and Daly Cherry-Evans dined and engaged with our guests, in an effortless manner. Each volunteered their time, and their highly entertaining stories, and in doing so, thoroughly endeared themselves to those who spent time with them. I suspect I will continue to field emails from our high profile corporate attendees for some time, extending their thanks to each of these legends of the game of rugby league.
It is of note, the media has been littered with less than flattering commentary and images relating to Rugby League over past months, and it is nigh on impossible to find a newspaper article, or television coverage, that does not focus on the negative. As such, it is disappointing to note the media was unable to cover this event, and to broadcast the infinite positives rugby league brings to the community as a whole. This event was but one shining example of eight outstanding legends of the sport, quietly, and without fanfare, willingly giving their time to raise money for a cancer that has by and large been forgotten, and statistically, is unlikely to ever affect them or their families. There was no hidden agenda, but instead a willingness to place their ‘celebrity’ behind the cause.
Thanks to the generosity of the NRL and these outstanding legends of the game, we are today $33,000 closer to finding a cure for sarcoma,(and climbing daily), and in doing so, the sport of rugby league has provided untold hope for those young patients who walk this road behind Cooper.
Your kindness, and your willingness to shine the light on sarcoma will never be forgotten…
A very excited Coop jumped in the car after the school sports carnival in July of 2014, announcing he had found the next Sydney Swans first grade player.
Coop had for some time been studying the form from afar, of this new SGS student who hailed from Cranbrook, and had noticed he was skilful, dedicated, lightning fast, and according to Coop, he had just the right balance of ‘mongrel’ and passion. Needless to say – he liked what he saw.
We were intrigued as it was rare for Coop to comment on others – he liked to back himself, and always did so. At a school where AFL was not an option for sport, it was even more rare to find those boys who did play the game at club level, and whilst there was a depth of AFL talent, this young man had obviously stood out from the rest.
The two formed a special bond, forged by the commonality of AFL, and then playing in the school cricket side together. They shared a love of sport, and a wicked sense of humour, often at the expense of others – but never spiteful. Some of my most fond memories of the boys were during cricket lunches where there was a look of pure joy on Coop’s face whilst devouring ‘Charcoal Charlies’, and strategising about removing the opposing side.
Lachie was not only a talent on the AFL field, but also proved to be a formidable opponent on the cricket field. At one point, he and Coop opened the bowling for SGS, and they relished every moment.
When Coop was diagnosed with osteosarcoma, it was Lachie and his beautiful family who were the first to put their hands up for anything and everything, and to this day, nothing has changed. Carolyn, Simon, Lachie, Ned and Ella provide our family with love and support, and never waver.
Cooper loved the fact ‘ Swaney ‘was then shorter than him, and enjoyed letting him know, he needed to grow if he was going to be serious about his AFL. This was his way of letting Swaney know he backed him. Swaney took the advice and grew…almost as tall as Coop – but thankfully he knew better than to overtake him.
Lachie was one of the few friends Coop would allow to see his condition deteriorate – a testament to their friendship, and the trust Coop held for his friend. At 16, Lachie showed immense courage in visiting and supporting Coop during some of his darkest moments – sometimes Coop was so weak Lachie would be forced to leave after a short time, but this never phased him. Suffice to say most adults would have found this process excruciatingly difficult – but Lachie took it in his stride, and provided untold comfort to Coop’s troubled mind throughout his swift deterioration.
On September 3rd, Lachie ably assisted his team at the East Sydney Bulldogs to a premiership, and as always, took a starring role in doing so. It is of note, this was only two days after we farewelled Coop in the hallow surrounds of the John Vallance Hall, on September 1, 20187.
As you may imagine, it was an easy decision to ask Lachie to join us as Ambassador at CRBF in honour of his friend who treasured their time together. We know that Coop would have loved to have seen how Lachie’s career is taking off, but it would come as no surprise. He always knew it would.
There is no doubt there will be an ever-present voice during every game Lachie plays, during what will no doubt be a stellar AFL career. It will be telling him what he is doing wrong, and how he can do it better – and reminding him he will NEVER grow to 189.5cm…
On Friday 10th August, 200 passionate classical musical lovers came together, and with the exception of rapturous applause, you could hear a pin drop. From the moment pianist Rob Hao emerged from the wings, to be seated at the grand piano to begin his recital, the audience were spellbound.
Rob’s recital, superbly set in the commanding presence of Big School Hall, at Sydney Grammar School, delighted all those who were fortunate to have secured a seat, and were transported to another place, whilst listening to late Chopin works, Bach and Alban Berg, together with an early Beethoven sonata to complete the flawless performance.
The Cooper Rice-Brading Foundation, and in particular the Rice-Brading family, wish Rob every success during his time in the UK, where he will commence an undergraduate Bachelor of Music course, majoring in piano performance, at the Royal College of Music in London.
There is absolutely no doubt how bright the future is for this accomplished young man, who is not only a talented musician, but the loveliest young man you could ever hope to meet.
Walkley Award winning ABC journalist and producer, Lesley Robinson has worked in current affairs for more than fifteen years, working for the ABC Foreign Correspondent, ABC News and Australia Television, before joining the 7.30 Report. This year Lesley put yet another jewel in the crown at the ABC by adding her highly successful style of journalism to the Four Corners team.
Lesley lovingly and respectfully produced Cooper’s story which was aired on the 7.30 Report on January 15 this year, and had spent an enormous amount of time with him filming him for the proposed story. Cooper had so much time for Lesley. He saw her as a serious journalist, and one who could reliably portray the perils of a sarcoma patient, but he also saw her as a very genuine and kind woman, and a devoted mother – someone he could trust. Coop was happy to have Lesley and her crew to film him doing what he loved over a period of many months.
Lesley became very close to Coop, and understood him well. He in return, forged a strong bond with her, and allowed her to see the raw reality behind the diagnosis, something he did not do with many. Lesley became very special to Coop and to our family over the months prior to his passing, and afterwards.
Three weeks ago, I was alerted by a third party, to the distressing fact, the precious, and largely unseen footage of Cooper had gone missing.
This footage bore the closing months of Cooper’s life, at a time when he was still happy, upbeat, and hell-bent on conquering his condition. We were not yet to the point where our family were able to watch this footage, however we were comforted by the fact the ABC had made the decision to give it to us, when they were under no legal obligation to do so.
After the year that has been for our family, this was indeed the final straw. The past three weeks have been simply heart breaking, as we exhausted all avenues in an attempt to locate these files, and in doing so, being met by obstacle after obstacle. It did feel at times like the most bitter of blows after losing Coop. There were days where it felt very hard to breath as we contemplated the extent and gravity of this situation.
As Coop declined, we would never allow any cameras, ours or others, around him. He despised his decline, and it was not something that we felt, should ever be captured. The footage taken just weeks prior to this however, showed a very different young man, facing his challenges in the same fashion as he had for eighteen long months.
Last night, out of sheer desperation, I contacted Lesley, who I had not wanted to bother with this issue. As a producer, Lesley is not expected to keep rushes (raw footage) whilst filming a story, so I felt it may cause her angst to be made aware of the situation. She responded in a very timely manner to tell me she felt there may be hope, as she often keeps copies of ‘important or precious’ footage. At 6.53 last night I received a message from Lesley saying she had the files.
There are simply no words that can express the extent and depth of our gratitude to Lesley.
Suffice to say we will never be able to adequately thank her for returning these precious memories to us…
Mama Cax (Cacsmy Brutus) is a Haitian born model , advocate, blogger and motivational speaker, based in New York who holds a BA and and MA in international studies. At 28 these achievements alone are impressive by anyone’s standards, and her life at first glance, seems to be complete.
But it is not just her stellar professional career that sees this stunning young woman stand apart from others, Cax as she likes to be called, has faced unimaginable adversity in her 28 years. Diagnosed with osteosarcoma which had metastasised to her lungs, and at the tender age of 14, the fight of her life began.
Cax early life was near perfect, in the idealic surrounds of her home in Haiti. Then in a blink of an eye, this all changed when constant pain in her hip was, after many visits to her doctor, finally diagnosed as osteosarcoma. Like most sarcoma patients, the diagnosis simply marked the beginning of a journey that most people would struggle to comprehend.
An intensive neoadjuvant chemotherapy protocol for twelve months was followed by an invasive twelve hour hip replacement to remove the tumour from the bone, together with a metal implant, which Cax’ body rejected, proved to be unsuccessful. The result was an amputation of her right leg, together with half of her pelvic bone. Keeping in mind all along Cax was the tender age of 16. When I was 16 the biggest issue I faced was what to wear, or how to avoid homework, and I am sure I am not alone.
The toll was indescribable and understandably, severe body image issues began to manifest, as the standard prosthesis that was fitted did not look real, and the reality of the magnitude of surgery set in. This is something rarely considered by those on the outside looking in. If you have your life, then to the outside world – you are deemed one of the fortunate ones. For those living this nightmare, it is yet another bitter blow.
Cax sourced an online community who identified with her concerns, she found Alleles, a company who made “fashionable, beautiful prosthetic covers”, and the shift in her self confidence began. During this time, Cax began her now highly successful Instagram account ‘Mama Cax’ which currently has 141,000 followers, to share her journey of ‘self love’.
By living by her mantra, she was able to “encourage others to feel less insecure and more empowered in theirs.” Adding, “I no longer feel disgusted looking at my scars. I now see them for what they are: proof that I survived, that I’m still here, and against all odds, won a vicious battle with cancer, and that’s nothing to be ashamed of.”
Cax, through sheer courage, determination and resolve, has turned the unthinkable, into a vehicle in which she guides and inspires others that walk behind her. She is a highly successful blogger, who is a disability advocate who has earned the right through her experience, to speak about positive body image.
For those of us who have lived this nightmare that is sarcoma, either as a patient or the loved one of a patient, we thank this inspiring, beautiful young woman for all she has done and is doing for those without a voice.
As we continue through July, international sarcoma awareness month, we are honoured to be presenting a number of stories from young patients and their families.
Today we are going to introduce you to Charlii Croese. Charlii is an engaging, effervescent young lady, who despite her challenges with sarcoma, has never missed a beat. Charlii has shared some valuable insight into life since her diagnosis.
At an age when the most difficult decision most sixteen year olds have, is what to wear, Charlii was battling osteosarcoma of the femur, undergoing unspeakably rigorous treatment regimes and surgeries.
Unless you have witnessed the devastation this cancer causes first hand, you cannot begin to imagine what these young patients go through, and yet Charlii, and Imogen like so many others, refuse to allow this disease to define them.
To say we are full of admiration and reverence for Charlii, and other young patients traveling this road, is an understatement.
Charlii Croese in her own words
I was diagnosed with osteosarcoma in my femur on 29th of February 2016. I was 16 years old…
What I struggled with most was seeing everyone around me move on with their life and mine just stood still. I wasn’t normal compared to all of my friends.
I lost many other cancer patients that I met through my journey and I felt so guilty to still be here without them. They became my family.
I lost many friends that couldn’t deal with me being sick so they stopped speaking to me and would ignore me.
I became quite depressed while going through treatment as I was always either stuck in a hospital bed or at home staring at the same four walls.
Still to this day whenever I get any ache or pain in my body I always think the worst.
Each day I always have a moment where I think about my journey. I still struggle everyday with what I’ve been through and how many people I’ve lost. So everyday I just tell myself I’m a fighter and to be positive and take everyday as it come.
Mum always said to me everyday while I was battling cancer take it one day at a time and ’til this day it is exactly what I do…
On the 30th May, I had the pleasure of attending an Australian Cancer Research Foundation function, where key speaker, was Professor Phillip Hogg, Director, Australian Cancer Research Foundation (ACRF) Centenary Cancer Research Centre, Centenary Institute, spoke at length about PENAO, which is an experimental anti-cancer drug which he invented.After searching the globe for experimental treatments for our son Cooper, which showed signs of efficacy for rare cancers such as sarcoma, it was indeed a relief to finally hear there has been headway made in this crucial and much needed area of research.
PENAO has recently completed a Phase I clinical trial in patients with solid tumours at three hospitals in Australia. It inhibits an enzyme central to sugar metabolism in tumour cells called mTOR, and combines very well with another mTOR inhibitor, everolimus. Everolimus is an approved cancer drug. Together, these drugs deplete cancer cells of mTOR.
A Phase I/II trial of PENAO in youths and adults with sarcomas that have an activated mTOR pathway based on mutation analysis is being planned.
mTOR pathway aberrations include PIK3CA mutation, biallelic PTEN loss, TSC2 mutation, Akt mutation, etc. The Phase I component is 2 x IV PENAO dosing per week to define the Phase II dose. The Phase II component is PENAO + oral everolimus.
ACRF funding helped establish a world class Centre for Basic and Translational Cancer Research on the Royal Prince Alfred Hospital site. This state-of-the-art facility houses the basic and translational research components of a Comprehensive Cancer Centre (only the second in Australia). The new centre extended the reach of basic biological research on cancer and its translation into cancer prevention and control.
The Centre was officially opened in March 2016.
Grant applications - ACRF this year will include:
The Cooper Rice-Brading are proud to provide our continued support the Australian Cancer Research Foundation.
Below is a transcript of the speech delivered by
CRBF Inaugural Mother’s Day Breakfast
11 March, 2018.
Cooper Rice-Brading Foundation board members, invited guests, and in particular, to each mum in the room this morning, welcome. My name is Mitchell Rice-Brading, and it is my brother’s name, that the Foundation proudly bears. I would like to thank you all for taking time out of your busy schedules to support the Foundation this morning.
It is indeed a pleasure to stand before you, and to embrace this celebration of a day, even though a number of us in the room will be thankful we actually remembered Mother’s Day this year. As sons and daughters, we celebrate the fact we dodged yet another bullet, that would see us otherwise trying to find a Coles flogging a box of Lindt chocolates at 50% off on Sunday morning. Never mind the fact we’re generally horrifically hungover, and are taking trips to the bathroom every 15 minutes during brunch. Of course, mums never articulate their disappointment, but you can tell they take some joy out of watching us squirm, and the icy stare says it all…
Jokes aside, no matter how much we do, or do not show it, we all remain grateful for the presence of mums in our lives. This particularly applies to matters of appearance. I’m sure I’m not the only one in the room here who receives feedback on their attire. I mean, I for one don’t know how I’ve coped without mum’s daily hints and tips over recent years, since spending less time at home. In fact, it’s really a testament to mum that I’m talking up here today fully clothed. Looking ahead 20 odd years, I can see a day when I’m visiting mum, like the caring son I am, and despite the fact she’ll be closer to *mumble*, her inner Alex Perry will appear, and she’ll comment on what I’m wearing. Ah well, at least it’ll be easier walking out of the cheapest retirement home in Sydney, knowing my decision to ship her out to Blacktown had been validated.
I should give everyone in the room some context for my comments here. All these bits of advice on my outfits, come from the same woman who took pleasure out of dressing coops and I in matching sailors outfits as innocent and helpless toddlers. Apparently looking like back-up dancers for the village people wasn’t enough, and we were also forced to rock haircuts where I can only assume we ran into financial trouble and couldn’t afford a hairdresser, so mum placed bowls on our heads and shaved anything that was visible. The result had us looking like we belonged next to the Beatles during the 60s, and fortunately, there are a pair of charcoal drawings on our walls ensuring our bowl cut phase is preserved forever. Not a dinner party goes by where the two creepy kids on the wall aren’t brought up, so thanks again mum for ensuring the good old days have been immortalised.
I should also mention mum’s prowess in the kitchen. Many of you here today will know mum as a very proficient cook, and I’m not here to dispute that, however there have been some swings and misses over the years. I distinctly remember one morning, where after weeks of unsuccessfully trying to get coops to take his morning fish oil tablet, mum decided to take things into her own hands. She very sneakily squeezed the fish oil under his omelette, operating under the assumption it would go unnoticed. It didn’t. “Muuuum my omelette tastes disgusting, what have you done to it”. “Nothing cooper, there is nothing wrong with it, now please stop complaining and eat it”. Of course, there was something wrong with it. There was fish oil in it, and that’s disgusting, but hey you can’t blame a mum for trying.
Now I know many of you will have parents on social media, and I know a similar amount of you will have parents who don’t know how to use social media, but I still think mum takes the cake. There are no two ways about it: it should be legislation that my mother is not allowed near an Instagram, Facebook, or Twitter account. However, until Mr Turnbull responds to my emails, we will continue hearing stories like these. Recently, I was messaged by a friend, saying that the Foundation Instagram page had put up an interesting insta story. I thought nothing of it, only to check the insta story, which is visible to all, only to be greeted by none other than mum, staring at the camera, unintentionally zooming in and out on her confused face five times. I could ask mum 100 times to put up an insta story, and every time she would honestly say she has no idea. But in my opinion, she saved the best for Dad, when she was under his alias on Facebook. thinking she was using the Foundation’s page, mum got excited when she saw the “add friend” button, and pressed away at familiar names and faces. Shortly after, I was made aware to the fact my father had been adding not only several of my friends, but also boys and girls from several years below. I need not elaborate on how uncomfortable this was for all involved, for so many reasons. So, if you’re listening Mr Turnbull, please get back to me A.S.A.P.
Mum wanted me to keep this introduction light-hearted this morning, and don’t worry I could stand up here all day rattling off anecdotes about her fails as a mum, but it would be remiss of me not to mention her qualities as a mother, and a person. For every fish oil infused omelette, there have been at least like, maybe 10 non-fish oil infused omelettes. Of course I’m kidding – Coopsand I were blessed growing up with daily hot breakfasts, and I know for a fact friends loved coming over for sleepovers, because breakfast itself was normally a 3 course meal consisting of fruit, eggs and bacon, and pancakes. Every morning we were driven to school, despite living one short bus trip away, and every weekend she’d be on the sidelines supporting us with our footy and cricket. In fact, this support was often audible. Very audible. I knew I’d done something good when I heard that familiar shriek reverberating across the field we were playing at. And of course, there’s her tireless work for the Foundation, ensuring the legacy Coops started is carried on valiantly, by putting on beautiful events like this one today. So mum, I want to thank you for being the kindest and most generous person I know, and don’t ever stop asking me if I would consider trying that other pair of pants on?
And to all the mums out there, I’m sure your own boys and girls will remind you over the weekend, but thank you for putting up with us. Thank you for picking us up when we got too drunk on goon at a party whilst underage, for cooking us dinner when we said we would be home and then we weren’t, and for letting us use the car for a couple of hours, and then not seeing it again until it needs to be filled up with petrol several days later. We all love you, and are blessed to have you in our lives.
Thank you for bearing with me, and I hope you all continue to enjoy the rest of your morning.
January 31, 2018
In an age where “millennials” as they are now fondly known, receive their fair share of unfavourable press, due to their reported oblivion to the world outside their own, it is always a good day when you can share a story which turns the tide.
Baxter Holt, is a young man from The Kings School, Sydney, who has been on the fringe of our life for many years. He and Cooper, had trialled side by side for representative cricket selection for many years, and had faced one another on the field on many occasions, throughout the Sydney GPS cricket competition. Coop’s big brother Mitch had also played against Baxter in the GPS competition.
But it was not Baxter’s outstanding achievements on the cricket field that find me writing this blog today, it was his caring, thoughtfulness, and his unsolicited kindness. Traits, which if you believe all that is written, are more often missing than not, in his generation.
Baxter took the time to write to Coop, when he was at his lowest ebb, after their school teams met on the field in the latter part of 2016. Cooper was struggling at this stage, as his cancer had metastasised to his right femur, and the pain of bowling was immense. He was however, hell-bent, on ensuring no-one outside the family knew. Baxter had no idea how serious Cooper’s condition was at the time, nor would he have known how much his words beautifully chosen words, meant to Coop, when he was so desperately in need of that random act of kindness. I have attached the link to the article written by Peter FitzSimons in his column The Fitz Files, (SMH) in which he writes of the this particularly meaningful gesture.
When it came time to choose the very important roles of CRBF Ambassadors, it became clear Baxter would the perfect choice. He embodies the unique spirit we envisage will be present in all we do in Cooper’s name, and the legacy he left behind.
Thank you Baxter for all you have done, and continue to do, for Cooper and his legacy. Your kindness will never be forgotten.