CRBF Support Kits for those living with sarcoma

When you are diagnosed with sarcoma, your world changes in the blink of an eye.  Life is suddenly filled with extreme angst and the unknown.

Our Patient Support Advocate, the late Jack Gibson knew this feeling all too well, and it was Jack who spent hours of his time thinking about those things that made a difference throughout his treatment.

With the exception of the rug he loved to take with him during his visits to hospital,(which we are yet to source) we have put together kits that reflect comfort, a little luxury and practicality.  Kits that provide momentary joy to those living with a sarcoma diagnosis.

Woolen beanies, lip balm by moogoo,  skin products crafted for those going through cancer treatment from Scout Cosmetics, exquisite product from Glasshouse Fragrances,  silk eye masks and sleepwear from Peter Alexander Sleepwear, The Tie Dye Project long and short sleeve apparel, silk/ satin pillow covers, are provided in the standard kit .

Kits are tailored to the needs of each patient, and we cater for all ages and gender.

We can only do this because of the exceptional generosity of the partners we have in place for this very important project.  Their participation and willingness to support our work has enabled this programme to expand exponentially over the past five years.

Suffice to say, this would not be possible without their support.

A life that once was, the love that always will be

The life that once was, and the love that will always be.

Always and forever…

Our family extends our heartfelt thanks to Professor Glenn Marshall AM, talented  artist, and eminent paediatric oncologist at the Children’s Hospital Randwick,  Director of the Kids Cancer Alliance, and Head of Molecular Carcinogenics Program and Translational Research at the CCIS for capturing Cooper as he would wish to be remembered on his 24th birthday.

This magnificent painting which forms part of Prof Marshalls series  “boy to man…” portrays Cooper as an 11 year old captaining the SEJCA representative cricket side, and in the foreground as a 16 year old playing T20 for the Sydney Grammar 1st X1 shortly before his sarcoma diagnosis. (Original photos attached)

A very sad goodbye to Jordan Stockman

It is with the heaviest of hearts that we share the passing of yet another very special young man – Jordan Stockman.

Jordan was diagnosed with metastatic Ewing sarcoma days after his 25th birthday in August of 2021, and staged a very courageous and public battle, using his sizeable social media following to raise awareness of sarcoma, despite the great personal adversity he lived daily.  He was determined to use whatever he had at his disposal to move the dial, and to ensure others his age understood the sinister nature of sarcoma in an effort to promote early diagnosis.

When meeting Jordan face to face he was surprisingly different from his social media persona. He was a gently spoken and considered young man, and his notoriety in the fashion world, and on TiK Tok failed to change his grace and humility, and in particular, the undeniable love he had for his family.

Jordan was one of six children to doting parents, Ahuaiti and Darrin Stockman.  You  could walk the earth, and never find a more loving, and more genuinely cohesive family.

In an unimaginable and deeply cruel twist of fate, Jordan lost his beloved mum to pancreatic cancer only eight short weeks ago.

Jordan’s story is a strong reminder of so much.  The fragility of life, the inequity of tragedy, the importance of making each moment count, but most of all, how love and family prevails over all.

We send our love and strength to Darrin, Corey, Jovan, Cullen, Kaelis and little sister Kye-Jana.

Rest in peace Jordan. You will always be one in a million.

If you would like to provide financial assistance to Jordan’s family you can go to link in Bio, or for an offer of practical assistance, please contact Tania Rice-Brading via DM on our socials or email  Tributes may be left on our social media, which will be collated and sent to the family.

Macquarie Bank supports sarcoma research

There is no better way to see 2022 out, than providing hope for the future to all those living with a sarcoma diagnosis.

We are honoured to announce CRBF was the nominated charity for the annual Macquarie Group Banking and Financial Services (BFS) Trivia Night. This is a staff event organised by volunteers within BFS to support philanthropic causes.

The event commenced with a CRBF sarcoma awareness video containing snippets of the speech Cooper Rice-Brading delivered to 250 guests at the launch of CRBF in March of 2017, using the platform to highlight the insidious nature of the disease, together with the severe lack of awareness in the community, and the dire lack of funding sarcoma receives.

Through the event, Macquarie staff raised over $173,000 for CRBF, a truly remarkable effort which will contribute to sarcoma specific clinical research and patient support in Australia. This will be allocated to two very exciting high level projects to commence in early 2023.

Our thanks cannot be adequately articulated to all of the Macquarie BFS staff who participated and their immense generosity.  This event would not have been possible without the organisational skills of the Macquarie BFS volunteers who organised the event in support of CRBF. Special thanks must go to Cooper’s school friend Mark Yam, together with Avantika Pratap, Georgia and Maddie Waites who worked diligently behind the scenes to ensure the resounding success of the event.

As the sun sets on 2022, we take this opportunity to wish each of our supporters the promise of hope, good health and happiness in 2023.  The work we do for those living with a sarcoma diagnosis would not be possible without your ongoing support and generosity.

Festive Season greetings 2023

May all that is beautiful, meaningful, and brings you joy, be yours this Christmas Day as you celebrate with those closest to your heart.

This year has been one of unimaginable loss but with it, unimaginable gratitude and love. Thank you so much for being there.

As always at this time of the year remembering those who may be facing great personal challenges and immeasurable loss.  You are never alone.

Thanks once again to the CRBF Christmas Bulldog Betty!

Swing For Sarcoma Inaugural Golf Day

On November 17, four remarkable young men, each with a strong personal connection to sarcoma, hosted the Swing for Sarcoma corporate golf day.

Ed Clark, Tim Telan, Patrick (Pat) Nekkan and Simon Danieletto are lifelong friends, and young professionals, who now have partners and young families, yet despite their personal and professional commitments, put their heart and soul, together with countless hours into ensuring the success of this event.   Our gratitude to Ed, Tim, Pat and SImon together with their partners, is difficult to articulate.

The work that goes into an event of this magnitude is immense, yet somehow this outstanding group of young men managed to produce a day which will be etched in the memory of those attending for many years to come.

The day was picture perfect, the event flawless, the Mt Broughton Golf Course simply superb, and those participating were outstanding.

Despite the fact there was no collusion with the final tally, the eventual winners of the inaugural Swing for Sarcoma cup were Pontoon Bar Darling Harbour team led by owner Mark Swadling, who has loyally supported CRBF and our work with sarcoma from the day we set out to instigate change.

This event would not be possible without the generosity of sponsors, far too numerous to mention,  each appearing in the attached video.  If you have the opportunity to support these generous individuals and donors, we ask that you do.

A very special mention to the fabulous Adrienne and Peter Glass and to the big-hearted Craig Hodges for their immense generosity in donating luxury stays at their respective holiday homes as auction prizes, which do not appear in the programme.

Photo credits to Pip Danieletto

Identification of sarcoma predisposition.

Three weeks into 2023, the stellar team at the Garvan Institute of Medical Research, Omico and UNSW, led by Professor(s) Mandy Ballinger and David Thomas today released scientific findings on the identification of genes and pathways associated with sarcoma predisposition.

The study has identified several new important genes that can cause sarcoma, and the implications of this research are far reaching for those living with sarcoma and their families, allowing detection of the cancer earlier and the potential for improved survival for those diagnosed with this sinister cancer.

The study has found a gene carried by one in 14 individuals diagnosed with sarcoma, which explains why the cancer emerges. In addition, the research team identified a previously unrecognised genetic pathway specific to sarcomas.

Professor Ballinger said today “Further understanding of the heritable genetic drivers will eventually lead to better outcomes for families impacted by sarcoma.”

The research was made possible by the dedication and hard work of those involved, and the support of funding partners

To read more please press the link below:

Link to Article

New York Marathon Kelland Style

The human spirit is such a powerful beast, and over past weeks we have seen examples of those closest to our Patient Advocate, Jack Gibson, such as his dear friends @poor_mans_everest, perform extraordinary feats whilst under immense personal duress.

Jack’s passing was always going to be felt far and wide. His special presence touched and continues to touch so many – not just in Australia but globally.

One such person is Nick Kelland. These days Nick is living in New York. Nick was part of “the gang” at Sydney Grammar School, and the friendship dates back to when the boys all began at College St. Nick is now living the dream undertaking an overseas posting in the financial markets.

Nick not only felt the deep loss of Cooper five years ago to osteosarcoma, but this past week has felt the immense loss of Jack, who was a fellow Sydney Uni student and friend.

Nick had planned some months ago to run the grueling New York Marathon and contribute to sarcoma research in the process. On the 6th of November, Nick finished this challenging event, despite feeling the loss of Jack, every step of the race.

Nick’s original target for fundraising for the marathon was $1000, however that was eclipsed in the first week of his campaign and today stands at $4500 and rising by the hour.

We are deeply grateful to Nick for taking on this challenge when it would have been so easy to walk away – and no one would have thought less of him.

Vale Jack Gibson 12/11/1996 – 1/11/202212

We are blessed to be involved in a field where we encounter life changing individuals on a daily basis. Mothers, fathers, sons, and daughters who capture the human spirit in a capacity you wouldn’t ordinarily have thought possible. We need not look past Cooper as proof of that, yet we fail to become desensitised to the extraordinary. Which is what makes writing this tribute today, so very hard.

Today we remember the life of an individual who reconceptualised our understanding of the human spirit, and who redefined the parameters of stoicism. He restored faith in our family when we so desperately required it. Today, we are heartbroken to be writing of the passing of Jack Gibson.

When Coops was undergoing treatment, we heard news of another boy who had been diagnosed with Osteosarcoma. We heard news of a fundraising campaign amongst the Colleges at Sydney Uni, where a bunch of boys were shaving their heads to raise money and awareness. Although a dire situation, we were amazed at the support being generated and the lengths people were going to. We were later to meet this extraordinary group of Jack’s closest friends, who leave us without words.

After he completed his first round of treatment, we were formally introduced to Jack and the entire Gibson family: Suzie, Neil, Harry and Lily. We needn’t wonder for much longer why people were going to the lengths they were. It’s difficult to verbalise the instantaneous impact Jack and the whole family has on those who meet them: we were just another addition to the list. Beneath the boundless smiles and positivity was a refusal to be defined by the situation. It was and remains innate. We formed an immediate connection, like everyone else.

Over the next few years, we became closer and closer with Jack, and we learned more about this beautiful individual. When you walked into a room with him, it instantly felt like a weight was lifted off your shoulders. He was innately caring, yet wasn’t overbearing; he was considerate, and always very considered. It was always quality over quantity. Jack had the capacity to hold a room in the palm of his hands from the corner of said room: he never needed to be the centre of attention, nor wanted it, yet people naturally gravitated towards him. This innate, reassuring aura ensured no one was exposed to the true brutality of the struggle he was facing. It was pure selflessness: it was never an active attempt to protect those around him, it’s just who he was.

His caring nature was personified in his perfect smile. Much is said of those who have smiles who light up a room: Jack Gibson had a smile that would light up 10 rooms. It was the external attribute that was emblematic of his internal personality. It projected an authentic sense of love that demanded it be reciprocated. And it was – always.

Jack genuinely loved and had time for all those around him, and everyone loved and had time for him. Proof of this was when he was informed of his prognosis a few months ago. Jack came down to Sydney and completed the challenging 14km City2Surf, inspiring all around him. He then hosted a party at the family property on the Manning River and kicked into the wee hours of the morning on the back of Sugar free Coke.

When told he may only have a few months to live, it would have been easy to shut up shop and bemoan the cruelty of his situation. No one would have blamed him for that. Instead, Jack spoke of the blessed opportunity he had to say goodbye to everyone, to all those that had meant something to him throughout his life. We need to remember we are talking about a 25-year-old. Words will never do it justice.

Jack’s impact on people extended beyond his close friends and family. His impact on the Foundation cannot be quantified. When we first met Jack, all he wanted to know was how he could help and would drop anything to do so. As a 22-year-old, he was spending nights sitting in CRBF Board meetings to help shape the direction of the Foundation. But diminishing his role to ‘featuring’ doesn’t do it justice: he was driving the Patient Support capability at CRBF. His impact on those within the Foundation will be felt for the longest time.

Over past months, we have received daily messages checking in on Jack’s progress, and it has been heart-breaking informing those checking in, of the dire nature of the situation. These are hardened men and women broken down because of the impact Jack has had on them. His role externally cannot be understated either.

Before we spoke of Jack’s ability to hold a room in the palm of his hands. This will never be better exemplified than his speech about “Hope” at Botanic House for the Foundation “Collaboration Breakfast” One medical advisory Board member, immersed in sarcoma for 40 years, described it as the best speech he ever had the privilege to listen to. It was, by any definition, perfect.

Whether it was to a room of corporates, our Board of Directors, or the patients he cared for, Jack’s ability to combine his lived experience with his innately caring nature and his beautiful delivery ensured his impact extended to all corners. He was the quintessential reluctant hero: an organic capacity to inspire. This was embodied by the outpouring of support, love and genuine concern for he and his family, when it was clear, his condition was worsening.

It is important to not gloss over the wide-ranging impact of the entire Gibson family. We love and admire Jack for his caring, stoic nature, yet we do not question for one moment where it stems from. Suzie, Neil, Harry and Lily all possess the qualities that have defined Jack over the course of his life. They have never admitted suffering nor pain: they have just kept fighting alongside Jack. The connection we have developed with the Gibson family will extend for many years to come. They have inspired us to be better people. Our hearts simply break for them today.

This leaves us to recognise Jack’s remarkable group of friends, young men and women who have not left Jack’s side or that of his family. They, together with their parents have wrapped their arms around the Gibson family and provided endless love and support when their hearts are also breaking.

A large number of this friendship group competed in Jack’s honour at last weekends Noosa Triathlon. Whilst each bearing the pain of Jack’s deterioration. This was an event Jack was also participating in, and the eye watering amount raised was directed to the national sarcoma patient support programme through CRBF.

Which informs this final paragraph. Jack’s presence in our family’s lives came at a time when we were at our lowest ebb. A young sporty kid, who had a deeply innate care for those around him, who discovered of his diagnosis following an injury: I need not spell out the obvious parallels to the son and brother we lost any further. He was a gift to us that we truly needed. He reminded us of the good in the world, at a time when we found no good in the world. It is true that he has filled the role in the Foundation that Coops was meant to: that driving force with lived experience like few others.

The reality is, he has filled that role in our family as well. We will never be able to articulate the impact Jack has had on us: the hole he dragged us out of, the lessons he has taught us, and the way we must continue to live our lives from here on out. We will have eternal gratitude to have been touched by his presence that will never do his impact justice.

As a son, as a brother; as family, as a friend; as a colleague, as a champion of the fight against sarcoma. In so many capacities, Jack Gibson is irreplaceable, and there is no escaping that reality. But we can ensure that legacy is undying by acting in the manner that he would. We can provide unconditional care for those around us; we can demonstrate resilience and stoicism in the situations that demand it; we can shine perspective on a situation to ensure we aren’t left bemoaning it’s direness. But most importantly, we can love those around us so genuinely that they have no choice but to reflect that love.

Rest in peace Jack – “May flights of angels sing thee to thy rest”…