Wishing a special man a very special day

Happy Birthday “Wippa”!

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.

Anya’s Wish 19 for 19 Challenge

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.

Should you wish to donate, go to link in bio.

Photos courtesy Simon Scott.

In memory of Dr Matthew Fisher

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

Jessica “Jess” Slee in her words

I’m Jess

I am 36yrs old, a wife to Keiran and a mum to Declan 5yrs, and Maddi 4yrs.

I have sarcoma, sclerosing epithelioid fibrosarcoma. Diagnosed in 2014. I have under gone 3 massive surgeries, the last leaving me with half a sternum, a few less ribs, no abs and a whole lot of mesh so I don’t cave in! I’ve done radiotherapy, chemotherapy, votrient, and clinical trials; including T cells and now immunotherapy. And after all that the tumors are still here, stubborn buggers, just like me. My formal diagnosis is; incurable, inoperable local metastatic fibrosarcoma.

I love to live. Cancer has brought back my spontaneous zest for life. Pre kids’ hubby and I would travel, weekends away, attend advents and take day trips. Two small children stole that freedom for a few years but we are now back and not wasting anytime. As a family we love the outdoors, the beach, new places, camping with friends and trying new things.

Prior to 2020 I was a Practice Manager; I’ve always loved the health industry and miss having a professional career. My husband is a Geotechnical Engineer and works a FIFO roster, so I am home with the kids. Although they test my patience’s I am so grateful I get to spend my remaining time on earth watching them grow and challenge my will to live ?

20/21 was a tough year of surgeries, treatments and disappointment. I have accepted my situation, as shit as it is, but I refuse to sit around. I am alive and I plan to be for a long time to come. I am incredibly passionate in creating awareness around this hideous disease. I’ve documented my story on Instagram; for me, for my hubby, for my kids and for anyone who might need it. Social media has been a wonderful support and outlet.

So that’s me, a very basic overview anyways. Please check out my Instagram page living.with.sarcoma. I am always up for a chat, for anyone who might need it, and if not my kids are absolute firecrackers and their content is sure to make you smile. They honestly don’t stop, like ever! Lastly; take the picture, say yes to the opportunity, and the washing can always wait. Time is a thief, steal back as much of it as you can.

Love Jess

An Aussie ‘Diamond’ dedicated to sarcoma

Be sure to be watching at 5.30 EST today as one of the loveliest and most grounded young elite sportswomen @amyparmenterr makes her Australian Diamonds debut in New Zealand – pictured with teammate @kiera_austin .

Amy, and her exceptional sisters @daisyparmy and @laraparmenter are the three remarkable young women @thetiedyeproject_ originally incepted in memory of their precious mum Gilly, who lost her life to mesothelioma in 2013.

In more recent times the trio have joined with two more forces of nature, young sarcoma survivor @mollycroft_ and her mum @angenjohncroft. Together the quintet are taking sarcoma head on with the most recent iteration of The Tie Dye Project soon to be revealed.

We wish Amy a truly magical night as she debuts for Australia and we all extend our deepest gratitude for the work she continues to do to progress sarcoma in Australia (in her spare time)

It takes a village, & CRBF has one of the best

Past weeks have seen a remarkable group from the AFL, the Sydney Swans, MCC members and AFL Cares, join forces to produce a Grand Final experience for an extraordinary family.

The heartiest of thanks to CRBF ambassador & all-round good guy Paul Roos, one of the nicest men in football Swans CEO Tom Harley & Ops Mgr the exceptional Amanda Turner, both going over & beyond, the fantastic Bec @ AFL Cares whose efforts leave us without words, the wonderful Holly Baker @ MCC Members & dear friends of CRBF, Carolyn Kay, Ange Croft and & Amy Parmenter.

This remarkable group conducted a masterclass in getting the job done. All were working ridiculous hours continuing well into today. Their dedication to helping us with this very special cause is humbling.

We extend our deepest gratitude to Ilan Weill, GM of Hyatt Centric Hotel Mel, Indya Dwyer & Louise Alford together with Hyatt centric Melbourne. CRBF has a long-standing association with Hyatt Hotels, & once more they have gone over and beyond to assist.

We wish the Swans all the best for today, acknowledging they provided the icing on the cake by digging deep to make it to the GF.

This is a side that is as truly remarkable on the field as they are off the field. A side that gives back to the community in so many ways.

CRBF has been one of those recipients over many years, & it’s a connection we hold close to our hearts. We would like to thank Cooper’s junior AFL teammate Nick Blakey, Captain Callum Mills, Harry Cunningham, and Tom Papley for the work they have each done over the years to heighten awareness of sarcoma in the Australia. We also recognise the wonderful friendship that existed with Manager Football Operations, Peter Berbakov, former captain Stuart Maxfield, & Coach, John Longmire.

It would be remiss to overlook the fabulous Gary Rohan who is now preferring the blue and white, to the red and white, however was a special friend to Coops when he needed it most.

Special acknowledgment to ABC 7.30 Report & Lesley Robinson for the precious footage.

A marathon run for sarcoma in Australia

A superhuman effort by Lachie Mactier today in the Blackmores Running Festival marathon. Lachie kicked the Poor Man’s Everest campaign off today with a masterclass in courage, and sheer determination to cross the finishing line after a gruelling 42kms!

Lachie together with Hunter Hordern and Angus Joyce, who are competing in the Noosa Triathlon in October, launched their campaign only two months ago, and the eye watering total is approaching the $20,000 mark raised for sarcoma services/research in Australia with a deeply personal connection to this cause.

It is difficult to find the words to thank this remarkable trio.

Lachie- we hope you’re resting and enjoying the moment. What an amazing effort? ….

The new MDT facility opens at RPA

We were delighted to be invited to the opening of the new MDT facility at RPA for the Bone and Soft Tissue Sarcoma Unit.

Equipped with the latest technology to enhance patient care, the facility is dedicated to the memory of Dr Annabelle Mahar, a much loved, highly respected and world-renowned member of RPA’s Tissue Pathology Department.

Sarcoma is an insidious cancer, treatments are complex and it is the leading cause of cancer related deaths in the 15 to 24 year age group in Australia.(AIHW)

Equipping our brilliant sarcoma trained specialists with the space and technology to collaborate in weekly MDT meetings is a critical component of optimal patient care for those diagnosed with sarcoma.

Today marked an important step forward, and with it, tangible hope.

Dr Teresa Anderson delivered the opening words, acknowledging the work of Dr Annabelle Mahar, whose name the centre proudly bears, together with an outline of why this facility is needed.

Dr Stephen McNamara, devoted partner of Dr Annabelle Mahar’s heartfelt speech today resonated with all in the room. A plaque commemorating Annabelle’s immense contribution to pathology at RPA sits at the entrance to this facility.

After an illustrious career that saw him a pioneer in sarcoma surgery in Australia, Professor Paul Stalley has now passed the baton to incoming Chair of the NSW Bone and Soft Tissue Unit , Dr RIchard Boyle, who officially opened the facility with well chosen words expressing the significance of this facility.

We speak for all those touched by sarcoma in thanking Dr Teresa Anderson Chief Executive of the Sydney Local Health District, and NSW Health for this investment in the future of sarcoma in NSW.