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
It’s so good to deliver positive news after a week of deep sadness.
Funding for sarcoma research & patient support in Australia is largely philanthropically driven. Most often, those behind philanthropy are extraordinary families who have lost a loved one & want to change the trajectory for others. One such family is the extended Hardyman family.
Tom Hardyman was approaching his 21st birthday, & a wonderful life lay ahead, when he lost his life to osteosarcoma in April of 2020, leaving behind another family to pick up the pieces.
In 2019 Tom’s uncle and cousin Andrew & Ben O’Connor set out to summit Mera Peak – Himalayas with a target of raising $64,000 for sarcoma research which doubled reaching over $128k. The duo however, was forced to delay their attempt due to Covid. Despite the delay, funds raised were directed to an immunology study at QIMR, assessing IL-23/IL23R Cytokine pathways, particularly sarcomas- pivotal research for the IL23 at GIMR – CRBF’s first funding priority & a prime example of collaboration in research & funding.
Fast forward to 2022 & last week, Ben (now aged 15) summitted Mera Peak, whilst dad Andrew suffered from extreme altitude sickness. Both are thankfully safe & doing well.
This brings us to Lucy, the remarkable cousin of Tom, born two days apart. The two shared a very special and deep bond growing up, Lucy describing Tom as “having a built in mate”. Yesterday, in Tom’s memory, Lucy ran the Husky Half Marathon, Jervis Bay, completing the gruelling course in fine style. Lucy continues to grieve the loss of Tom, yet she has been heartened by the flood of support shown for her, for Tom, & the dire need to assist those living with a sarcoma diagnosis. Lucy’s efforts yesterday amassed an incredible $12,500 – rising by the hour & added to the $8,498 already raised under Running 4 Tom. All funds raised from this campaign will be directed to the forthcoming sarcoma helpline pilot, assisting sarcoma patients & families.
We thank this remarkable family, far too numerous to mention, & who despite the grief they live with daily, strive to improve life for those who walk behind their precious Tom.
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.
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”…
This has been an unspeakably difficult week for the sarcoma community with the ripple effect reverberating nationally. So many friends and family hurting and living with the pain of the loss of a loved one.
We sadly share the news of yet another family in our community who this week mourn the loss of their beloved wife and mother.
Australians are known for their generosity when others are in need, and this was evident by the way in which they wrapped their arms around the stockman family in July. This is when it was discovered both mum Ahuaiti and son Jordan were living under very difficult conditions with advanced metastatic cancer.
Ahuaiti sadly passed away on Monday night, surrounded by her cherished family and more love than could be imagined.
Today, the family farewelled their precious Ahuaiti in a magnificent service, celebrating their Māori culture.
We send our love and strength to husband Darrin, Jordan, Jovan, Cullen, Corey, Kaelis, and Kye-Jana together with extended family.
Today, a team of remarkable young men and women, completed the gruelling Noosa Triathlon in honour of their dear friend Jack Gobson raising well over a staggering $27,000 (and rising) for sarcoma patient support in Australia.
When the team first set out – their target was a very respectable $5000 or alternatively 200 donations which today stands at 230 averaging at $120 per donation.
Poor Man’s Everest was the brainchild of Jack Gibson, lachie Mactier, Hunter Hordern, andAngus Joyce, however the boys were joined today by Hugh Jameson, Emma Duncan, Will Gyles, Lucie Holden, Siobahn Shaw, Tom Molloy, and Dylan Boakes.
This month, this team have funded the following:
Travel expenses of a patient travelling to and from treatment ($6150)
Subsidising medicare gap payments – ($1950)
Fertility procedures and egg preservation – ( $8500)
A mobile phone and plan for 12 months for a young patient forced to spend weeks in hospital without connection to his friends and family- ( $2341)
Grocery and petrol cards for a sarcoma family struggling to make ends meet ($700)
Clinical supervision for the Fergus McCulla Psychological Support Programme ($1600)
Leaving a surplus of $5700 to be directed to patients and families in November.
How do we even come close to thanking this outstanding group of young friends competing in honour of a young man we all hold in the highest regard?
To the man who will stop at nothing to raise awareness (and funding) for sarcoma in Australia – even partaking in an impromptu Brazilian wax courtesy of a plaster cast during Celebrity Apprentice – all while on national tv .
We are forever in your debt.
Happy birthday Wippa, the next wax is on us!…
Also an appropriate way to see out September – childhood cancer awareness month.
The Wipfli family Sarcoma Research Fund was named in honour of Wippa’s eye-watering win in the first Celebrity Apprentice challenge in 2021 which together with The Kids Cancer Project brought hope for young sarcoma patients nationally with the inception of the phosphoproteomic paediatric AYA sarcoma clinical trial at the The Children’s Cancer Institute.
We wish you a magical day that is as special as you are to so many.
Photographs courtesy of Celebrity Apprentice Australia.
Ethereal & spectacular are just two words that spring to mind after watching the sunrise this morning as it peeped through the fog in the Armidale highlands – the venue Kenwood Park owned by the Coffey family.
A picture perfect morning marked a wonderful start to the annual 19 for 19 Challenge, raising critical funding for osteosarcoma research.
The remarkable @liziegan, Will Winter and children Alex, Alice, Annie, & Hugh host this event in memory of their beloved daughter/sister, Anya who lost her life to osteosarcoma in September of 2020.
This challenging 19km event represents one km for every year of Anya’s brief life, and takes on some of the most breathtaking scenery imaginable as seen in the attached photos.
Today the Armidale community wrapped their arms around this very special family resulting in an extraordinary turnout. Those making the effort were richly rewarded with breathtaking surrounds and a simply glorious day, in the knowledge that every step was a step closer to curing osteosarcoma.
While final counting is still underway, expectations for this event lie upwards of $220,000 which is utterly incredible! It will also provide much needed hope for the future for osteosarcoma patients .
Thank you to those very generous donors who backed Colin and I finishing – we are happy to report we are in one piece and sadly about to leave this magnificent region.
Funds from this event have been directed to osteosarcoma specific research, the work of Dr Emmy Fleuren at @childrenscancerinstitute who also oversees research for the CRBF sarcoma specific phosphoproteomic trial, funded by the generosity of @Wippa1 whilst on Celebrity Apprentice Australia.
We would like to thank Anya’s amazing family, the Armidale community for their warmth, Rydges Hotel Armidale for their hospitality then allowing us to clean off the mud ready for our flight home, Tour de Rocks for their outstanding organisational capability, and @tasarmidale whose students provided a lot of light entertainment along the way.
Louisa Gunning is a student at ANU, studying history and maths. She also works as a swimming teacher for children, but Louisa is no ordinary 20 year old university student. She is planning to shave her beautiful head of hair for the second time for cancer – this time to advance research for sarcoma.
The cause is personal – her cousin Naomi Chun lost her husband to rhabdomyosarcoma in January of 2021. Naomi has two young daughters three and six, and despite her remarkable approach to life without her much loved husband Matt, she is left to contemplate each day without the man she married only five short years prior to his sarcoma diagnosis.
The fund set up in his memory, Dr Matthew Fisher Sarcoma Research Fund has raised almost $100,000 for the IL23 sarcoma specific sub study, at the Garvan Institute of Medical Research, and this time Louisa will be directing funds to Phase two of this clinical trial.
On behalf of all those living with a sarcoma diagnosis in Australia, we wish to thank Louisa for raising much needed funding for high level sarcoma research in Australia, and raising awareness in an effort to promote early diagnosis of this cancer.
To support Louisa go to https://donorbox.org/in_memory_of_matt