Take 45 minutes out of your day to put your EarPods in, and listen to our latest Podcast, Let’s Talk More About Sarcoma, a collaboration between Sock it to sarcoma! and CRBF.
It may save your life or that of someone that you love.
In this episode we are delighted to have Dr Richard Boyle, eminent sarcoma surgeon, & the Head of NSW Bone & Soft Tissue Sarcoma Unit at RPAH, Dr Michela Sorensen, Dr Michela Sorensen, Medical Practitioner who has not only seen sarcoma in her practice, but has also suffered the unspeakable loss of a family member, and finally Merryn Aldridge, who worked as a physiotherapist for the Australian Athletic Team at the 2014 Commonwealth Games, and once again has encountered sarcoma through her practice. This highly credentialed trio speak about the importance of symptom recognition, your rights as a patient, and the importance of timely referral to a sarcoma specialist.
An enormous thank you to Cathrine Mahoney & Darcy Milne, the stellar team behind this podcast series for the second season. Suffice to say without their professionalism and willingness to assist us with this very important project, this production would not be possible.
Sarcoma is still considered to be the forgotten/neglected cancer, despite the AIHW predicting again in 2021 it would be the leading cause of cancer related death in the 10-24 year age group in Australia.
Efforts to fund research and drug development for sarcoma are more challenging due to a lack of awareness and understanding. It is difficult to raise funds for research if the community don’t know the nature of the cancer, or even worse, they have never even heard of it.
During the 2021 Global Sarcoma Awareness Month, we aim to further highlight: ⁃ The critical need for early diagnosis, ⁃ Symptoms and ‘red flags’ to be aware of, ⁃ When you should see your medical professional, ⁃ Your rights as a patient, and ⁃ The need for timely referral to a specialist clinician/team.
It is also a month when we acknowledge those patients living with a sarcoma diagnosis and ongoing treatment, and those who have completed treatment and resumed their lives. And of course, remember those who tragically lost their lives to this insidious cancer.
We team once again with our colleagues from across the Nullabor, @sockittosarcoma to produce the national awareness campaign, which will include a powerful video, and our podcast season 2 – Let’s Talk More About Sarcoma.
We’d like to thank patients Mika, Margaret, Celso and Jack, along with experts Dr Antoinette Anazodo and Sarcoma Nurse Katie Thomson, for helping to create this moving yet informative piece.
We wish to thank the amazing team @by_enthral – in particular Jordan Laing & Emma Robertson for their creative direction, and for donating their time and all agency costs involved for the video. This meaningful production would not have been possible without their generosity.
We also extend our gratitude to @cathrinemahoney and @darcymilneee for their outstanding work once more on the podcast for the second year running.
Help us this July, in spreading awareness about sarcoma, to help end the needless loss of lives.
ANZSA begin their Sarcoma Awareness Month webinar series with an in-depth look at the role of the carer.
Mandy Basson, Managing Director of Sock it to Sarcoma, and Associate Professor Georgia Halkett will join ANZSA Consumer Advisory Panel member, Karen Laurati in shining the light on an area which is so often overlooked.
Mandy is well -versed with the often unmet needs of the carer, having been by her daughter Abbie’s side from diagnosis and throughout her treatment, then continuing her daughter’s vision to make a profound difference in the lives of sarcoma patients.
The organisation has provided over a decade of support to patients, families and carers and continues to to provide an important resource for those sarcoma patients who need it most.
Associate Professor Georgia Halkett will bring her highly professional perspective to the table, after the release of her recent research paper earlier this year – The unmet needs of carers of patients diagnosed with sarcoma: A qualitative study.
If you or a family member is a carer for a sarcoma patient, this is a webinar not to be missed.
Use the QR code below to register, or go to the ANZA FaceBook page by pressing the link below:
Christine Cockburn, Patient Care Co-ordinator with Rare Cancers Australia shares her vast experience on addressing the unmet needs of those who live with a rare cancer. She will be joined by ANZSA Consumer Advisory Panel member Karen Laurati, who knows this road well, having been diagnosed with sarcoma, undergone treatment, and now enters survivorship, and a very new phase of her life.
Christine leverage her vast experience with a broad cross section of rare cancers, to provide compelling insight into an area that has the propensity to be overlooked, from treatment and throughout diagnosis. This will be balanced by Karen’s invaluable patient perspective, having lived the nightmare of a sarcoma diagnosis.
If you are a patient diagnosed with a rare cancer, in particular sarcoma, or a carer/family member, this webinar will be an extremely useful tool in finding additional resources which may potentially assist you.
Wippa and his beautiful wife Lisa, sons Ted and Jack with sister Francesca
Australian media heavywieght and Nova radio host Michael “Wippa” Wipfli and highly accomplished media public relations executive Cathrine Mahoney came into Cooper’s life at a time when he was not keen on letting the outside world in.
He had very little time for anyone outside his inner sanctum of precious few people beyond immediate family.
Cooper’s condition had been deteriorating swiftly and savagely, and the outside world, even those closest to him throughout his brief life, were shut out. He did this to protect his friends. He wanted their memories of him to be positive, and not what he had become at the hands of sarcoma.
The exception to the rule were ‘Cath’ and ‘Wippa.’ Both very quickly became part of Cooper’s circle of trust and an extension of family.
Coop had a strong nose for genuine people and throughout the 18months from diagnosis to treatment, he ran his own race. He did not want to become the “boy with cancer” that elicited pity, he was hellbent on being the survivor, so becoming a token cancer patient for someone else’s personal gain, was never on the cards. He had avoided those who sought his company for pity, causing offence to some, but always sticking to his moral compass. He learned very early in the piece – Cath and Wippa were the real deal.
Both made Cooper laugh and times spent with them individually or together, were highpoints for Coops. Quality time spent with him away from cameras and media, resulted in a surprisingly strong bond and swift bond forming between the three. Unique as it was special. Each brought unbridled joy to his life when little else could.
Unsurprisingly, Cath and Wippa’s lives were impacted greatly with the news of Cooper’s passing, and from where our family stood, we couldn’t have blamed them for closing the door, and moving on. But neither chose to.
Instead, both continued with unwavering love and support for our family, at a time when we were at our lowest ebb. As a special aside, it wasn’t long before their respective families also became part of our lives, extending that very special bond, and providing enormous comfort through a myriad of highs and lows.
As we fast approach four years without Coop, Cath, Wippa and their families remain firmly by our sides. These remarkable friends continue to step up and do what they can to preserve Cooper’s legacy.
We have called on Cath and Wippa so often to assist with various projects along the way, and never once have they faltered.
Last year, both participated in the ground-breaking podcast series “Lets talk about sarcoma”, incepted and produced by Cath, giving up hours of their time and expertise to craft a finished product that resulted in a global distribution, and a meaningful tool for patients and families. Neither would accept payment in any form. Yet another labour of love, but one that held so much gravity.
Only two weeks ago, Cath and the highly talented Sarah McGilvray, who appears side by side with Wippa on the highly rating Fitzy and Wippa breakfast show, together with her role as co-creator of the very successful Nova production, “Not another parenting podcast’ performed for our guests at the annual CRBF Mother’s Day Breakfast, braving the Covid issues at the time, delivering a flawless and hysterical segment on parenting.
Which brings us to the announcement tonight.
Late last year, an unexpected call from Wippa advised us, albeit confidentially, he was going to take the Foundation with him onto the forthcoming Celebrity Apprentice Australia as his charity of choice. We were simply lost for words, and deeply humbled. We are a relatively new charity (4 years registered) and despite the high-profile charities Wippa could have chosen, he opted to choose the Cooper Rice-Brading Foundation, providing us with the opportunity of a life-time.
Filming for the Celebrity Apprentice Australia was incredibly rigorous over six days, and Wippa continued to burn the candle at both ends while filming took place, continuing is turning up each morning for a 6am start on his highly successful breakfast show, whilst also creating pilots for his production company.
This unspeakably difficult schedule did not only impact Wippa, but his wife Lisa, who was unwavering in her support. So many sacrifices were made by this family over the many weeks of filming, and for this reason, it is nigh on impossible to express our gratitude to Lisa, who at the time found herself juggling two children under the age of 5 and a new baby.
Tonight we have all watched on as Wippa’s dedication to advancing sarcoma, his bloody mindedness to ensure a win at all costs attitude, and never ending perpetuation of his very special friendship with Cooper, resulting in a win of enormous proportions. Funds that will make a quantifiable difference in the lives of the patients who are currently living without further treatment options.
We are thoroughly delighted to announce, Wippa’s outstanding efforts will be directed to supporting patients and families living with a sarcoma diagnosis, and toward the funding of a pivotal paediatric phosphoporteomic sarcoma specific clinical study through the Zero Children’s Cancer Programme, which will be named the Wipfli Family Sarcoma Research Grant. This funding will support the Sarcoma Research Laboratory of Dr. Emmy Fleuren at Children’s Cancer Institute. Funds will be allocated to identify activated (phosphorylated) targets in sarcoma patients not covered in any other project, and will build the laboratory evidence needed to ultimately transform research findings and clinical recommendations.
It is impossible to articulate our thanks to Wippa, his beautiful family, for an opportunity which is rarely granted to a charity in its formative phases. This funding will provide the very real possibility of saving young lives, and will start a much needed conversation about sarcoma.
How blessed are we that Cooper left us the gift of friendship with his two special friends and their extended families?
We wish to thank the profound generosity of our Mother’s Day Breakfast donors for making this event possible.
We would ask that if you have the opportunity to support these individuals and corporations, we would urge you to do so.
Our deepest gratitude to Robin Todd for sourcing these beautiful prizes, and to each of the businesses that appear on this page, who have supported the funding of sarcoma research in Australia
Autore Pearls Shepherd Hook 10mm South Sea Pearl Earrings valued at $2100
Thank you to Exceed Digital North Sydney for our programmes
20 bunches of antique pink roses and gypsophila were generously donated by The Fresh Fowers Group
Polite Society Portugese cotton bed cover valued at $850
The prize table under construction on the morning prior to guests arriving
QVB Tea Rooms High Tea Voucher valued at $140
Glitz Wool Shrug valued at $60
Our generous donors appeared on the inside cover of our programme
Our sincere thanks to the Fresh Flowers Group for providing our flowers for the Mother’s Day Breakfast
Tilley’s gift box valued at $120
Corolina Gift Voucher ($250) and Made On Earth Gift voucher ($50)
Louenhide ladies handbag donated by Reads Woollahra
Random Harvest Gift Pack valued at $60
The beautiful Glasshouse Fragrances rebranding was a perfect fit for our tables
Fab Slabs Charcuterie Boards valued at $100
Glasshouse Fragrances gift bags, containing Glasshouse product, a Tilley’s soap, discount vouchers from Elitra & The Bolted Post Rose Bay, and Koala Eco spray
Cristina Re Dream Catcher Coffee Set valued at $140
Cellini leather handbag valued at $200
Bianc earrings donated by Studio B valued at $250
Tilley’s hand soaps gifted to each of our guests on the day
Candles by Ange gift with purchase of a book of tickets
Bess Flowers Paddington, ($80) Woollahra Bookshop, ($100) Parterre Garden ($100) The Boathouse Rose Bay ($100)
Didgeridoonas travel bags generously donated by Eagle Outdoors
Candles by Ange – gift with purchase of a book of raffle tickets
3 x Cymbidium Orchids
Polite Society lucky book buyers prize – Angela Karozis
We thank Glasshouse Fragrances for providing the full size items for each gift bag, together with Tilley’s soaps, Koala Eco spray and Elitra & The Bolted Post discount vouchers
A divine table napkin set, platter and 4 x natural tinke tea towels valued at $319 and kindy donated by Bay Tree Woollahra
Koala Eco gift pack valued at $100
Saint Peter The Whole Fish Cookbook and fish scales
Koala Eco Hand and Surface Spray which each of our guests will take home in their gift bag
Bianc drop earrings donated by Studio B
This is what 20kgs of Lindt chocolate looks like…
Daniel Ferguson’s exquisite designs donated for the ticket buyers prize
Winner of the Daniel Ferguson bespoke designed blue topaz earrings Anne Lynch wearing them beautifully
Kathy Christie pictured wearing the gorgeous Autore South Sea pearl shepherd earrings, as major winner of our raffle.
Young adults living with incurable illnesses will have access to respite care when Australia’s first hospice for young people opens on Sydney’s northern beaches next year.
NSW Premier Gladys Berejiklian together with major funders of the project, two of Australia’s leading philanthropists Kay and Greg Poche, today turned the first sods of soil at the site of the adolescent and young adult hospice, which will provide palliative care for 15 to 24-year-olds and their families.
The facility is the first of its kind in Australia, and will lead the way for similar facilities across the country for young people, who are currently forced to seek respite care in aged care facilities.
The facility cannot come soon enough. Young adolescents are over the age of 18, are currently no longer able to use the Bear Cottage paediatric respite facility.
The $19.5 million development is the result of combined state and federal government funding, community fundraising and philanthropy, supported by a very generous contribution from Kay Van Norton Poche and her husband Greg Poche.
Ms Van Norton Poche, who has supported Bear Cottage for many years, decided to back the project after learning young people were often seeking respite in nursing homes and rehabilitation centres.
“I just thought, we’re better than that. Dignity begins with life, and each life has it. So let’s give it to people that we can, when we can,” she said.
Member for Manly James Griffin said the facility would provide care for young people across NSW, including from rural and regional areas.
“This is a wonderful example of what happens when government, community and philanthropy come together to unite behind a single cause,” he said.
As 7am Friday the 7th May arrived, the rain that had been with us in Sydney for many days, together with the dark gloomy skies, momentarily cleared, and sunshine bathed the Wisteria Room, at the Centennial Park Homestead.
Right up until the 11th hour, this event hung in the balance due to the Eastern Suburbs of Sydney Covid scare, and the NSW government restrictions that followed.
The welfare of our guests would always be front and centre of this event and immediate procedures were put in place to allow cancellations and protection of those who still wished to attend.
The support of our special guests for the morning, allowed us to continue with a full programme, and for this we thank the ever-professional Melissa Hoyer, Cathrine Mahoney and Sarah McGilvray, the unflappable Georgie Katsanevenakis, together with the endless support of Jarrad Sapsford, and Marc Chami. Each of these remarkable individuals did not waver with their support of the event.
Melissa was outstanding. Her warmth, attention to detail and professionalism is second to none, and the careful preparation she places into hosting duties, the love and support she has shown the Rice-Brading family and Cooper’s legacy, together with the time she donates for charitable purpose, is truly remarkable. We are indebted to Melissa for her willingness to host this function over three years and the astonishing thoughtfulness she places into doing so.
Cathrine and Sarah are two of the most grounded women in the media, despite what they have achieved throughout their respective careers, with each of their stars continuing to rise. Their segment on parenting, relationships and motherhood provided a light-hearted and funny account of the day to day perils we are all so familiar with. Sarcoma is not a light subject, and to have these talented women lift the mood of the morning is something so very special to all of us at CRBF.
Our special guest speaker, Georgie Katsanevenakis was exceptional. This is a young woman with the world at her feet. Georgie shared her sarcoma diagnosis and her inner thoughts with a spell bound audience, and never one faltered. Despite the adversities in her life, she continues to inspire those who meet her, with her warmth, positivity, and grace. For Georgie it is a case of “watch this space”…
Jarrad Sapsford and Marc Chami are two exceptional young men who attended Sydney Grammar School, and were in the same year as Cooper. They bravely performed the poignant A capella performance of ‘Shenendoah’ at Cooper’s service in 2017, together with Rob Hao, and Jasper Schoff. Marc and Jarrad performed flawless recitals of Memories (Maroon Five), Your Song (Sir Elton John) and La Vie En Rose (Edith Piaf). As in past years, you could hear a pin drop as they held our guests in the palms of their hands.
CRBF’s own Mitchel Rice-Brading may be a Clinical Psychologist in waiting, however he is also a very polished public speaker. He conducted what was to be an interactive piece with our guests, which was severely restricted to due to Covid. A combination of thank you’s and roasts, he was highly entertaining and topical.
We thank our major sponsors of the breakfast, The Fresh Flowers Group, Autore, Glasshouse Fragrances and Lindt Chocolates, together with a list of prize donors too numerous to mention, but will be recognised separately for their generosity. Without your contributions, this event would not be possible.
Thanks must also go to the Trippas White Group and in particular Leena Chugani and Amy Tran for their excellent organisational skills, and the hospitality staff for keeping our guests safe on the day.
Ed Howard from East Coast Creative provided our beautiful photographs on the day, together with a selection of personal shots from Georgie Kats. CRBF would like to thank Ed for volunteering his time to capture these important memories.
Zoran Loveski from Sodium AV has been working with CRBF for three years, and is a consummate professional in his field. He also volunteers for the Children’s Hospital at Westmead, and we wish to acknowledge his dedication and the provision of the highest standard of audio visual production for our events.
Finally we wish to thank our volunteers, in particular Robin Todd for her tireless work over many weeks to secure raffle prizes, Kirsten Martensen-Arms, Kate Longden, Claire Bonic, Martin Rossleigh, Keith Cox, Tracey Neaverson and Gloria Gapes.
Because today is Mother’s Day it is one of three days each year we can use the CRBF social media platform for a post with a personal twist.
Those who know me, know I love our children Mitchell and Cooper to the moon and back, and together with CRBF co-founder & long-suffering husband Colin, & errant French Bulldog Betty, (not necessarily in that order) they are put very simply, my life.
On Friday, Mitch, delivered a flawless segment at the Covid ravaged CRBF Mother’s Day Breakfast. He roamed the room & thanked our key guests. Others were not quite so lucky. I was one of them.
For those of you who didn’t attend this event Mitch informed our guests I “incessantly hounded the event organisers to have the venue serve alcohol @ 7am” for our hallmark CRBF breakfast function – in particular “a brick of Bundaberg Rum”, I sat for two minutes with the words to “killing me softly “, playing in my mind, eyes roaming the room looking for imaginary thought bubbles. “Where is she keeping that hip flask?” “Did the staff actually serve her coffee in that cup?”
Mitch I know you choose my retirement home, but you skipped a step – I choose where your inheritance goes.
There is a more serious note for today’s post. CRBF would like to wish all the remarkable mother’s and significant others, joy, peace of mind, time with your loved ones, and a special day making special memories. It is a day when we remember and honour those whose Mother’s Day will never be the same, as their child or indeed their mother no longer walks beside them.
To those mums, this day will always be met with a multitude of mixed emotions. A stark reminder of a perfect life forever altered. Mother’s Day is a day to surround yourself with those who matter most, to do something simple that brings joy, or to simply march to the beat of your own drum. There is a no size fits all solution to these special days in the calendar.
Whatever form Mother’s Day takes for you, we send our love to each of our mums, & thank you from the bottom of our hearts for the difference you make in our lives.
Karen Simpson and Jo Capp are remarkable mums with equally remarkable sons.
Both Karen and Jo-Ann stood by their son’s sides every step of the way, from the day of their respective sarcoma diagnoses, throughout savage treatment regimes, and beyond. Neither missed a beat.
With Mother’s Day fast approaching, it is timely to remember those mums whose lives have been impacted by tragedy of varying degrees, and to hold them in our thoughts and in our hearts.
Jake’s story
In the words of his mum, Karen Simpson
Jake Simpson was a normal sport mad young man living a normal life, when his life changed irreversibly. Jake was diagnosed with cancer on 12th December, 2012. On Christmas Eve in a further bitter blow, that cancer diagnosis was confirmed as Ewing Sarcoma.
Jake commenced treatment on Boxing Day, and was given the daunting prognosis of a 25%chance of survival.
The cancer was first located in Jake’s spine, hip and chest plate when the initial cancer diagnosis was made, and by Boxing Day, it had metastasised to his collar bone, shoulder, and throughout his skull and bottom.
Chemotherapy initially worked, and in August Jake had a stem cell transplant and by October the family were informed he was in remission. For 15 months he lived normally celebrated his 21st birthday and continuing to reach all medical milestones.
Early January 2013, he complained of a sore back and on Australia Day it was confirmed the cancer had returned, this time no chance of survival unless a cure was found.
November we were told he wouldn’t see his 23rd birthday after chemo and radiation it just wasn’t working. 12 weeks later on the 17 February he closed his eyes.
Jake never once complained and never asked why? He started a bucket list, and those last 10 weeks he had adventures with his family. Unfortunately the sarcomas on his spine paralysed Jake and he was bed ridden for the last few weeks of his life, which according to his mum Karen, “annoyed him”.
Jake fought courageously, but that cure just didn’t come.
Today these woman honour their sons with the tireless work they each do to advance sarcoma awareness and funding, despite the hand of cards they have each been dealt.
Reid’s story
In the words of Jo-Ann Capp, Reid’s mum
Reid’s diagnosis of Ewing’s Sarcoma came when he was a month off turning 6 and it was incredibly life changing for all of us. Occasionally he complained of a sore leg. We put it down to growing pains.
On May 21 2007 we were told he would be facing massive doses of chemotherapy, perhaps some radiation on his lungs, the loss of his right tibia with only a 30-60% chance that he would live.
We got through all the treatment then due to having his tibia removed and replaced with his left fibula Reid went on to break this leg 14 times over the next 10 years. He spent his entire childhood until he was 16 in either a cast or with an Illarzarov frame attached to straighten or lengthen his leg. He is a pretty resilient little bugger, and not too mention a demon on crutches!!
He is now 19 (nearly 20) and enjoying everything a young man his age can do! He is at University in Brisbane studying to be a teacher and loving his freedom living away from the watchful eyes of his parents!
As if this process was not enough?, Jo-Ann went on to write a book, Four Hot Chips – “One family’s story of childhood cancer, love and how they survive, and how they nearly didn’t”. The book is now available through Audible, by following the link below:
CRBF and the sarcoma community wish to extend our sincere gratitude to both Karen and Jo-Ann for their courage, and for their unwavering dedication to funding a cure for this insidious cancer.
