Category: CRBFNews

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.

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)

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 taniarb@crbf.org.au.  Tributes may be left on our social media, which will be collated and sent to the family.

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.

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!

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

To donate to Bricks and Smiles: The Zac Minty Project, please go to https://www.gofundme.com/f/zac-mintys-little-wings-fundraiser