Category: CRBFNews

The Guest House at the Park Hyatt Sydney was bathed in morning sunshine, as guests arrived to our spectacular harbourside venue for the 2022 Mother’s Day Breakfast, supported by The Abouhaidar family and Secure Agility.

A combination of new and very familiar faces began to fill the room, while the beautiful tones of the uber talented Jarrad Sapsford and Marc Chami embraced each guest as they arrived.

Guest host for the morning was to be fabulous Melissa Hoyer, despite her best efforts, was very unwell the night before, and therefore unable to join us.  Her co-host Mitchell Rice-Brading went solo and took the event in his stride, delivering a very professional finished result, and delighting our guests once more with his humour, sensitivity and the ability to think on his feet.

Breakfast canapes consisting of a selection of organic yoghurt & granola cereal shots with berries, anti-oxidant smoothie shots, navette bread, tomato & mozzarella di Buffala and fresh basil, smoked salmon and horseradish cream, charcoal and sesame bun, Croque croissant, smoked ham & Emmental cheese, scrambled eggs, sour dough crumble were served.

During the breakfast service our guests were treated to a highlight performance from our young musicians, of Ed Sheeran’s Visiting Hours. Jarrad and Marc have performed from our first breakfast, and have put their hand up each year to continue the tradition.  This year Marc, a medical student at UNSW was forced to leave early for hospital rounds which illustrates the level of commitment these young men have to this event each year.

Keynote speaker, Elizabeth Egan then took to the podium and delivered a heartfelt and raw account of Mother’s Day without her precious daughter Anya, taken at nineteen with osteosarcoma.  Liz embodies the courage and poise of the remarkable woman she is, and her words at the Mother’s Day event were as impactful as they were heartbreaking.  There was silence in the room as Liz eloquently imparted to our guests, the unimaginable tragedy of losing her daughter Anya at age nineteen, and bravely outlining the driving force of what lies ahead for the family in the wake of Anya’s passing.

Liz and her partner Will Winters, and their children Alex, Annie, Alice and Hugh, have founded the 19 for Nineteen challenge to raise funds for osteosarcoma specific research under the auspices of Dr Emmy Fleuren at the CCIA.  Details for donations and how to participate can be found at https://www.tourderocks.com.au/19-for-19

Liz’s poignant speech was followed by “A Caring Life” panel hosted by Nine media personality and the most personable man in Australian television, Peter Overton, AM.  “A Caring Life” is the title of CRBF Director, Keith Cox’s memoirs which was released two weeks ago.  The panellists reflected facets of Keith’s outstanding professional and personal life, where he has devoted himself to serving the community as a cancer nurse practitioner for almost 50 years.  The Hon Bronnie Taylor, MLC, Gail O’Brien OA, Fiona Jekki-Kordahi and Juliette O’Brien joined Keith and Peter in the discussion which added further context to the book itself.  Each of these people played a significant part in Keith’s professional and private life, and the fireside chat was lively, informative and at times very funny.

The raffle concluded proceedings, which saw the very popular and much loved osteosarcoma survivor 15 year old Molly Croft team with the Hon Bronnie Taylor, MLC to draw the winning ticket(s).   Esther Heathcote took out the major prize which was an original piece of art from renowned Aboriginal artist, Kylie Tarleton.  The painting depicted a cockatoo, which Esther shared with us are frequently seen on her country property, where the artwork will hang.

We are so deeply grateful to our donors and sponsors for the event, Secure Agility, Park Hyatt Sydney, Taylors Wines, Manning on the Mansfield and the Gibson family, Mr Phillip Fikkers – Macleay St Bistro, Kylie Tarleton, du Moulin Gallery and Fine Frames, Lord and Lion, Lindt Chocolates, Cristina Re, Cellini, L’Occitane, Koala Eco, Victor Churchill, The Woollahra Bookshop, Parterre, Luxury Getaways and Tilley Soaps Australia.  Without your profound generosity, this event would not be possible.

As always, this event is possible because of the team behind it.  Robin Todd, Kate Longden, Dr Mariana Sousa, Gloria Gapes, Esther Heathcote, Martin Rossleigh and Colin Brading all worked so hard during and prior to the event, to ensure its success.

Special thanks to the team at the Park Hyatt Sydney, and in particular Aoife Burns, Brandon  Colby, Christine Haddad, and Tara Lau for their ongoing assistance and professionalism over past months.

Finally, these events are reliant on the generosity and attendance of our wonderful, and very loyal supporters.  We will look forward to seeing you all again next year.

Recognising the remarkable achievements of the outstanding women who contribute so much to advancing sarcoma, whether it be in science, medicine, allied health, a patient, parent, carer, family member, volunteer or philanthropist..

Far too many to include by image and name today.

In so many ways you each help to make the world go round for so many living with a sarcoma diagnosis.

Fergus Mculla was a very special young man to many, staging a courageous battle with rhabdomyosarcoma, which tragically ended in August of 2021.

The team at CRBF formed a very special bond with Fergus and his remarkable family over past years, and as a result, many of us witnessed first-hand, the resilience and positivity Fergus showed throughout his treatment .  No matter what life threw at him, his beautiful smile was never far away.

No matter what life threw at him, his beautiful smile was never far away. CRBF is delighted to announce the Fergus McCulla Psychological Support & Wellness Programme will be officially launched this month, and will be free of charge for all patients and families. Please press the banner to read more.

Fergus was also a voice for change whilst he underwent treatment, especially concerned about the level of formal support offered from the point of diagnosis and beyond. His courage was always evident in his ability to share his sarcoma journey on social media, helping others navigating the same pathway, and in doing so, providing support and a shoulder for many. Press to read more of this remarkable young man and the new CRBF programme named in his honour.

When it became time to name our psychological support programme, it was an obvious choice that it should bear Fergus’ name.

CRBF is delighted to announce the Fergus McCulla Psychological Support & Wellness Programme will be officially launched this month, and will be free of charge for all patients and families.

This programme will provide an additional layer to our peer support programme, and will be fully supervised by two experienced clinicians.

Please email Keith Cox, Director Patient Support at Keith.Cox@CRBF.org.au or Tania Rice-Brading Patient Support Coordinator at Taniarb@crbf.org.au should you wish to discuss or register for this programme.

Please see below a transcript of the speech delivered at the launch of the programme on Wednesday 1st December, at the Collaboration:  The key to unlocking advancements in sarcoma  Breakfast – delivered by Clinical Psychologist, Louise Hird.

‘My journey into the traumatic world of Sarcoma began as unexpectedly as everyone’s does.  My son, George, who you many of you heard speak at the CRBF corporate breakfast a couple of years ago, was very good friends with Cooper Rice Brading.  Cooper was great fun, had a wicked smile, played in the same cricket team as my son and was an avid Swans fan – he had a big future but his future also included Sarcoma.  His diagnosis came out of the blue, was sudden and we all thought he would be fine.  He wasn’t.  We knew nothing about Sarcoma – I am not sure I had even heard of it.  I now know that Cooper’s story is typical of many young Sarcoma sufferers. 

My son’s relationship with Cooper and involvement with the CRBF as an ambassador for the Foundation, kept myself and my family connected to Tania, Colin and Mitch  and the CRBF. Through that relationship, I have learnt a great deal about the perils of the diagnosis. More recently a dear friend who is in this room today, has been diagnosed and I have watched him and his family struggle with the same uncertainty, confusion and fear. Not only is very little known and very few treatments available but there is very little support for the individuals and their families diagnosed with sarcoma.

I am a Clinical Psychologist working in private practice.  I am very aware of the lack of funding and access generally to emotional and psychological support services in the community and how difficult it can be to navigate mental health services and find access to the right service or provider. I have learnt that Sarcoma patients and their families have very particular needs.  They  often feel very isolated as they don’t have the same access to support groups as other Cancer sufferers.  The support that they need is simply not available.  Sarcoma is extremely rare and that means that a diagnosis is extremely lonely and limited  research has been done in relation to the specific needs of people diagnosed with Sarcoma. This is changing thanks to our colleagues at Sock it to Sarcoma in WA.

I spoke at length with CRBF about this difficulty and began to work with my colleague Dr Lahvinya Kulaendra, a practicing psychiatrist, to develop a program that might address the very apparent gap in services available to Sarcoma sufferers.  Lahvinya and I have taught together on a number of programs working to develop psychological skills in young medical students, psychologists and psychiatrists. This project presented us with some unique challenges, these were not a group of people identified because of mental health difficulties but they were a group of people very much in need of support.  There is very little funding available to research and understand the scope of the unmet needs or to even clearly identify what the needs of Sarcoma patients are? And how could we fund such a service? By tapping into psychology students hoping to apply for Clinical Masters programs we found a group of people with the right skills and motivation to offer their services voluntarily. We approached the CRBF to financially support the development and delivery of a training program for the volunteers and they agreed. We selected our first group of volunteers who are all here – Merran Cunningham, Mitch Rice Brading, Nathan Salgo and Henry Foley –  and so this new project began to take shape. 

So many people have contributed their time voluntarily to make this new program possible.  Without this collaboration and without volunteers it could never have happened.

Many thanks to Keith Cox,  clinical nurse specialist whose deep knowledge and understanding of the nature and unpredicatable trajectory of Sarcoma and of the patient’s needs was invaluable; to Richard Boyle , sarcoma specialist and orthopeadic surgeon, for taking the time to teach us about the pathology, etiology and complex treatment and management of the illness, to Mandy Basson from SockItToSarcoma! who briefed us on the huge deficits in the emotional and psychological support offered to the patient’s and their families through the research her team is doing in WA. 

Finally, to the patients and families who joined us at the invaluable and at times heartbreaking round table discussions.  Here the patient journey was relayed,  to help us understand the deficit of information available, the limited treatment options, the loneliness and the isolation of being diagnosed with a rare cancer where there is little funding and support groups are limited.  And lastly many thanks to our volunteers for the amount of time they have given to this program and for their patience as the projected developed and changed. 

I am very excited that we are able to launch the Fergus McCulla Psychological  Support and Wellbeing Programme  today.  There is no doubt that there is great need in the Sarcoma community for such a program and I am very honored to have been part of this collaborative venture.  I hope that with further collaboration and funding we will be able to expand not only our medical understanding of the pathology, management and complexity of sarcoma treatment but also to offer individuals with Sarcoma support as they confront their diagnosis, treatments and suffering.’