Karen is a Senior Policy Adviser with the South Australian Chamber of Commerce and Industry with a background in Workplace Relations and Advocacy. Karen’s initial diagnosis occurred in 2011 when she discovered a melanoma on her back which was excised. In Early 2013 she discovered a lump under her right arm and was referred to a surgeon for surgery followed by radiotherapy.
Within 6 months Karen’s disease had progressed to stage IV. A lack of treatment options other than chemotherapy lead Karen to research clinical trials and for the next two years Karen flew fortnightly to Melbourne to participate in the pembrolizumab arm of the phase III MK3475-006/Keynote-006 clinical trial. Within three months it was clear that Karen had responded well and gratitude led to her taking up the facilitator role for MPA in South Australia and presenting to third year medical students as part of University of Adelaide Cancer Voices Survivors as Teachers program.
Karen recalls, during her darkest moments she called Melanoma Patients Australia, which was a shoestring operation supporting patients at that point, ‘They understood in a way no one else did”. The obvious success of the drug that was to become known as Keytruda for many patients, her response and the heartache of seeing others not being able to access it led Karen to join the MPA lobby group adding her story to the written submissions to PBAC to successfully have Keytruda subsidised under the PBS within a record time.
Since then Karen was able to return to work, care for her family (the youngest at diagnosis was 4) and increase her advocacy activity in the area of access, immunotherapy and lymphoedema. She has been involved as a consumer on several committees, associate investigator in several research projects from grant application stage and has an ongoing relationship with melanoma researchers in South Australia. Karen is a Board Director for Melanoma Patients Australia and serves on the executive for Cancer Voices SA. Karen has spoken as a consumer advocate at various scientific events including Skin Cancer College Australasia 2016 and 2018, Survivorship Conference 2017, Cancer Nurses Conference 2017, World Melanoma Congress 2017, COSA 2018 and PharmAus19.
Ross is an Executive and Non-Executive Director with more than 35 years broad and strategic experience across community and human services. Ross has substantial experience in for purpose community service operations. This experience includes the provision of services nationally, state, and rural and remote locations across Australia.
Ross is skilled in assisting organisations to design strategy, make sound investment decisions and position themselves competitively. Ross strives to demonstrate ethical and accountable leadership and has a strong appetite for innovation, collective leadership, and business/mission impact approach to continuous improvement.
In 2019, Ross was diagnosis with a stage IV Melanoma in his brain. The tumour was surgically removed and then followed with 14 months of Immunotherapy. This experience has given him first hand lived experience of melanoma, good and bad, as well as the medical education through his treatment journey and own research. This diagnosis has changed his life in so many ways including him making a change in his career. Ross has had an amazing result and is keen to help MPA achieve its Vison of creating a world where no one affected by melanoma walks alone.
Ross’s various professional roles have required advocacy to change societies attitudes at a community level. Ross has found that this is predominantly achieved through education on the issue, utilising data, and research.
This experience has given him some unique insights to how society education is so important when it comes to shifting attitudes that either change behaviors or result in funding allocations.
It has helped him understand that representing, and more importantly helping those who you we advocate for represent themselves, is vital when then there is such a diverse range of experiences and often one solution does not meet all needs.
Peter has a professional background in education, project management, consumer engagement and social justice. His most recent appointment was at the Victorian Equal Opportunity and Human Rights Commission. He is also a Civil Celebrant.
Peter’s first encounter with melanoma was in 2014 when an early melanoma was excised from his back. In 2017, he discovered a suspicious lump in his right axillar and he was referred to the Peter MacCallum Cancer Centre (PMCC) for assessment and treatment of Stage 111b metastatic melanoma. Following further surgery, Peter undertook a year of immunotherapy as adjuvant therapy.
During his treatment, Peter not only learned the value of appropriate and timely support and information, but also the important role that networking and advocacy can play as he actively lobbied PBAC for the listing of Nivolumab as adjuvant therapy on the PBS.
Peter is passionate about empowering and harnessing the consumer voice and ensuring it is heard at all stages of treatment, research and policy development. Peter is currently a member of Melanoma Research Victoria’s Consumer Reference Group and is an active member of PMCC’s Consumer Register.
David Thiele was a school principal prior to his encounter with melanoma. David is presently a Tertiary Supervisor of teacher undergraduates at the Australian Catholic University in Canberra. Along with holding key leadership positions in a number of schools, David has also worked as a senior officer with Catholic Education Canberra Goulburn and as a sessional lecturer instructing teacher undergraduates at the Australian Catholic University in Canberra.
After being quite unwell for about six months David was finally discovered to have a large mass in his mediastinum between his heart and right lung which was severely restricting the returning blood flow to his heart in July of 2016. When biopsied the mass was determined to be Melanoma. A PET scan revealed further metastases in both lungs as well as his adrenals. A primary melanoma on the skin had not been found. With surgery and radiation not really an option given the position of the largest of the tumours David commenced immunotherapy. After six months of Nivolumab the mass had continued to grow and the number of metastases in his lungs had increased in number and in size. David then commenced Nivolumab in combination with Ipilimumab. After four infusions over twelve weeks of this combination David became gravely ill with severe colitis, hepatitis and diabetes. His thyroid and pituitary gland shut down and he developed a clot in his right lung. During a three month stay in hospital under a regime of high dose steroids David then developed osteoporosis from the steroids which caused major and permanent damage to his spine leaving him with crush fractures to eleven vertebrate.
In short however, the Nivo/Ipi combination and three years of adjuvant Nivolumab did its job and while he continues to work on the rehabilitation of his back David presently has no evidence of disease.
The support of family, friends and an entire school community is what David feels got him through and beyond his terminal diagnosis and through the lowest times of the disease and the very long and arduous rehabilitation process. Having experienced such great support and ready access to treatments David hopes that through Melanoma Patients Australia he is able to advocate for, and support others, particularly those who may not be as fortunate to experience the same family and community support that he did.
David is also passionate about the prevention of Melanoma particularly about what can be done in the education space. David considers schools as only one way to learn and is also very passionate about adult education and learning beyond the classroom in general. David believes that an understanding of how adults learn is important when developing awareness and education prevention campaigns and for when advocating for, or assisting someone understand, their diagnosis and the treatment options available to them. David is also the Melanoma Patients Australia Support Facilitator for the Canberra region.
Anne’s 30 year career has been in the advertising and marketing industry, she has worked for major Australian brands as well as international advertising agency groups. She is a senior manager with expertise is in managing large teams and partners to deliver integrated marketing.
In 2010 Anne was diagnosed with a Melanoma on her back which was excised with no apparent spread to lymph glands. In 2018 she had pain across her upper back and put it down to an injury from a gym workout. What transpired was 6 weeks of debilitating pain which spread right throughout her torso and to the tops of her legs and arms. She was eventually diagnosed with Stage IV Melanoma in the bones and advised that the historic prognosis of her diagnosis was 12-24mths. Anne had an incredible response to only 2 infusions of ipilimumab/nivolumab and just 97 days after diagnosis had no evidence of disease.
Her first contact with MPA was joining the Facebook group which the day before she received the news her treatment had been successful. She recalls feeling guilty about posting to the group about her results however, she found the group welcomed the news of a positive story and it was then that she understood the power of providing hope to others going through the journey.
Anne is focussed on driving a change to the ‘Bronzed Aussie’ culture and has been advocating to incorporate sun safety into advertising industry guidelines. She speaks regularly at advertising agencies and marketing departments to share her story and influence a change. Anne is a member of the Consumer Advisory Panel for MASC Trials, is on the Program Organising Committee for the 6th International Conference on UV and Skin Cancer Prevention 2024 and has spoken as a consumer advocate at other events including: Skin Cancer Prevention Queensland’s Sunscreen Industry Forum 2022; Launch to Federal Parliament of the State of The Nation Report into Melanoma 2022; Australasian Melanoma Conference 2021.
Sally is a graduate of the Australian Institute of company directors and has 30+ years’ experience in working with and for Businesses for better outcomes – owning her own Advertising Agency and currently COO to a number of businesses in property and hospitality.
Sally’s beautiful sister Alicia Blayney did not survive melanoma, it only took 18 months and in the windstorm of that time Sally believes she would have found Melanoma Patients Australia of great comfort. The vision of Melanoma Patients Australia ‘Creating a world where no one affected by melanoma walks alone’ – stood out as a compassionate, warm and heart felt melanoma movement that Sally wanted to be apart of
Being socially passionate in developing ethical and viable services Sally has brought energy and experience to mentoring young women, food insecurity and children’s safety.
