Garvan Institute – Sarcoma Research

Using whole-genome sequencing to research deeply into our DNA has led to the discovery that all disease is linked to genetic mutations so that instead of trying to treat disease symptoms, we can now target the mutations causing them. This is personalised medicine.  Read more about the outstanding work of the Garvan Institute, providing untold hope for sarcoma patients.

https://www.garvan.org.au/research/diseases/sarcoma/research

Researchers discover potential new therapeutic target for Ewing sarcoma

The sarcoma research group of the Bellvitge Biomedical Research Institute (IDIBELL), led by Dr. Òscar Martínez-Tirado, has identified a potential new therapeutic target for Ewing sarcoma, the second most frequent bone cancer in children and adolescents, and a tumour known by its aggressiveness and tendency to metastasise.

https://www.news-medical.net/news/20180405/Researchers-discover-potential-new-therapeutic-target-for-Ewing-sarcoma.aspx

ASSG 2018 Sarcoma Research Grants

ASSG Research Grants 2018

ASSG have four grants on offer funded by generous donors, and are awarded for direct research costs. Selection criteria include track record and project feasibility, innovation and excellence. Please click on the links below for individual grant information.

The Johanna Sewell Sarcoma Research Grant
 $50,000 for one year

The Leon Stone Sarcoma Research Grant $20,000 for one year

The Xavier Krikori Sarcoma Research Grant $20,000 for one year

The Hannah’s Chance Sarcoma Research Grant $30,000 for one year

 

http://www.australiansarcomagroup.org/2018-sarcoma-research-grants.html

A sad goodbye to a beautiful, bright shining star…

March 12, 2018

 

 It is with profound sadness, we have learned of the passing of Gabriella Wehbe, a courageous, and inspiring young lady who staged a fearless and hard -fought battle with rhabdomyosarcoma. Gabby and Cooper were the same age, and were both treated by the outstanding sarcoma team at Chris O’Brien Lifehouse, and this is how they met.

As a family, we were in awe of Gabby’s strength, and humility and the grace in which she took life in her stride, making every moment count.  We will never forget the 15th November, 2016, at Sydney University Great Hall, when she and Cooper, despite their personal adversities, delivered speeches outlining their respective sarcoma journeys.  Together these bright shining lights, contributed to the outstanding amount raised that evening, of over $500,000, which benefitted the Comprehensive Sarcoma Centre at Chris O’Brien Lifehouse.

Gabby’s speech reminded the guests that night, that no matter how tough the day is, it is nothing in comparison to what young sarcoma patients face hourly, and most choose to simply get on with the job at hand.  Rarely a day passes when I do not recall Gabby’s or Cooper’s words from that evening, which are etched in my memory forever.

Suffice to say, Gabby would never quite know or understand the joy, the hope and the inspiration she brought to so many.  She will remain a beacon of light in our lives which are enriched as a result of the inspiration you provided so many

Our hearts tonight break for the Wehbe family, and we join with all of those whose lives Gabby touched in sending love, light and strength in abundance to her wonderful family.  We understand all too well, your unfathomable loss, and we vow to continue our work in fond memory of the bright shining stars, who have touched our lives forever.

 

Sarcoma does not have a face, until that face is someone you love…

March 3, 2018

“My dream is for urgent and much needed change to assist sarcoma patients globally. The inception of my Foundation was and is, for the purpose of instigating this change, and to use my significant sporting affiliations, and my passion for journalism to raise grass level awareness, thus stimulating critical funding.

Put simply, my role now is to be the face of the Cooper Rice-Brading Foundation, and the human face of sarcoma, and to ensure my story is told.  No matter how difficult my journey,  I need to convey to others the personal side of this diagnosis, and the need for the critical change required to significantly alter the trajectory for  sarcoma patients everywhere.”

(Cooper Rice-Brading – June 12, 2017.)

 

Friday the 26th February, 2016, marked a very dark day in our lives.  It was the day Cooper underwent a routine MRI to diagnose a suspected tear in his bicep, and after two hours wedged in an MRI machine, anxious, alone and bewildered at the time the process was taking, he was to eventually find his life had irreversibly changed.  A routine MRI had become what was to be a death sentence for our precious son and brother.

Osteosarcoma is an insidious cancer by any standards, and is now classed with other sarcomas, among those childhood/young adult cancers with the worst survival outcomes.  Despite this, it has by and large, been overlooked, and there is statistical evidence to suggest diagnoses are rising, with a  documented 40% increase from the previous decade. (Professor David Thomas, Director of The Kinghorn Cancer Centre and Head of the Cancer Division of the Garvan Institute in NSW.)

It is then perplexing to say the least, this cancer has not received the attention it so desperately needs, together with funding that has been missing from the Australian Government cancer budget.  Instead, philanthropy is responsible for the vast majority of  funding, and most often comes from the loved ones and their friends, of those children and young adults who have tragically lost their lives.

Sarcomas are part of the rare or less common cancer collective which are responsible for the deaths of 25,000 people per year in Australia.  These figures account for half of all cancer deaths, and many of these patients did not have access to treatment options simply because their cancers were rare.  Approximately one third of cancer diagnoses are rare or less common cancers, consequently a key recommendation of Rare Cancers Australia, is for a third of government research spending in cancer be directed to rare or less common cancers.  (Rare Cancers Australia, Rare Solutions A Time to Act 2017).

On average, seventeen life years per patient are lost due to sarcomas which is an impact three times greater than bowel, lung or breast cancer.  The cost to the community through the health system of bone and connective tissue tumours was $29,593 in 2003, (Professor David Thomas, Director of The Kinghorn Cancer Centre and Head of the Cancer Division of the Garvan Institute in NSW.), more than three times that of colorectal and breast cancer combined, and yet there has been no marked improvement in life expectancy, nor treatment options. Current figures are not available, and in all likelihood would show a marked upward trend since 2003.

The needless loss of life, the sheer emotional hell experienced by patients, and the lack of mainstream treatment options, which may accompany a sarcoma diagnosis, are no longer acceptable, and never were.

Cooper’s face, ‘the human face of sarcoma,’  in videos, photos, documentaries and interviews  is a constant reminder of  the work we continue to do in his absences, and why as his family, we continue to do it…

 

 

Making a lifetime of difference…

February 16, 2018

Imagine holding the same position for almost fifty years?  And then imagine that position is one of the toughest and most mentally taxing professional disciplines on offer?

Oncology Nurse Practitioner, Keith Cox OAM, or ‘Saint Keith’ as Coop used to refer to him as, is a truly unique and wonderful individual by anybody’s standards, and for 48 years, he has provided untold hope, professionalism and guidance, throughout a cancer journey, for those who are afraid, alone, uncertain, and everything in between.

 

Dr Richard Boyle (L)   Cooper Rice-Brading (Centre)   Keith Cox OAM (R)

Photograph courtesy – Chris O’Brien Lifehouse

 

Oncology is a mentally challenging, tough, and often thankless specialty, and it serves to make Keith’s 48 years of dedication to making the lives of cancer patients bearable, truly extraordinary.

For those of you wondering what an oncology nursing practitioner is, Keith’s position was a highly specialised midway point between a doctor and a nurse, and as such, for those cancer patients who have been blessed to be under his care, his role was a critical one.  It bridged the gap, and often for the patient, it was often the difference between a very good day and a very bad one.  The stories about Keith’s willingness to smooth the rough waters for those patients blessed to have been assigned to his care, are so numerous, they would require a sizeable book to record them.

Cooper, a child anxious about what lay ahead, masked in a grown man’s 6 foot 2 physique, met Keith on day one at Chris O’Brien Lifehouse, and developed an immediate connection with him, as all patients did.  This warm, calm, unassuming, gentle individual, remained with Coop throughout his treatment, and provided untold comfort during the particularly tough times, of which there were many.  He and Coop joked about many things, debated treatment options, together with ‘best practice’ (Coop was often caught turning his drip rate up to suit his sporting schedule), and everything in between.  Coop looked forward to the day when his treatment was over, and he could return as a volunteer for Keith, as he felt he had Keith’s role ‘covered’, and his contribution would be significant.  Life as we know it, rarely goes as we plan.

I can only now, imagine how with the passing of each patient Keith has opened his heart to, has resulted in the great personal sense of loss he must feel for each, yet we often overlook this impact when we are immersed in grief ourselves.  How difficult it must have been for him to face the families of the patients who do not make it out the other side?  His attachment to each was obvious – it was never a case of just another patient.  He has done this and so much more, for almost five decades, and has continuously found a way to make a difference in so many lives, and in so many different ways.

Asking Keith to join the CRBF Board, was a very easy decision.  He embodies every quality we envisage our Board members will have, together with an intimate knowledge of what is required to truly make a difference in the lives of sarcoma patients everywhere.  He was though, first and foremost, Coop’s great mate.

Keith, we wish you all the wonderful things life can bring now you are in retirement, and hopefully,  you can finally find time to reflect on your outstanding contribution to the world of cancer, and it may even see you contmeplating the notion of finally putting yourself first – every now and again…

Watch Keith’s story as told by Carrie Bickmore, on The Project.

https://tenplay.com.au/channel-ten/the-project/extra/season-9/healthcare-hero

Simply the best

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.

http://www.smh.com.au/sport/the-fitz-files/fitz-20170303-gupzp5.html

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.