Consumer representatives

Danielle Boyle is the Founder and Chief Executive Officer of ITP Australia and New Zealand (ITPANZ), the peak patient organisation supporting people living with Immune Thrombocytopenia (ITP) across Australia and New Zealand. Diagnosed with ITP in 2015, Danielle's journey has included a splenectomy and the challenges that can come with living without a functioning spleen. These experiences have given her a firsthand understanding of the importance of patient education, preventative healthcare, and access to reliable information and support.

As a consumer representative with Spleen Australia, Danielle is passionate about ensuring patients lived experience is reflected in healthcare services, education, and research. A recognised global ITP advocate, she regularly works with healthcare professionals, researchers, and pharmaceutical and biotechnology organisations worldwide, helping bring the patient voice into conversations that shape the future of care. For Danielle, being a consumer representative is about turning personal experience into positive change and helping others feel informed, empowered, and supported throughout their healthcare journey.

Ken graduated in medicine from the University of Melbourne in 1974 and built a long and rewarding career as a GP in Melbourne’s north-eastern suburbs. After establishing a practice in Bundoora, he spent 39 years caring for generations of local families before retiring in 2021. One of the highlights of his career was looking after up to four generations of the same family at the same time, something he considers a great privilege.

Soon after retirement, an incidental finding during investigation of a liver lesion revealed a pancreatic duct stricture with a potential risk of cancer. Surgery was recommended, requiring removal of part of the pancreas and his spleen. While early cancerous changes were found, no cancer was present.

As a GP, Ken had long valued the advice and support provided by Spleen Australia, particularly its vaccination recommendations. Following his splenectomy, he experienced that support firsthand as a patient. Keen to give back, he became a patient advocate and remains impressed by the dedication of the Spleen Australia team.

His message to people without a spleen is simple: register with Spleen Australia, stay up to date with vaccinations, maintain a regular GP, and seek trusted advice when needed.

Robyn Grima brings valuable lived experience to Spleen Australia as a passionate advocate for people living without a functioning spleen. At 25, she underwent major surgery to remove her spleen and much of her pancreas following the diagnosis of a large benign pancreatic tumour. At the time, there was little information available about living without a spleen, and organisations such as Spleen Australia did not yet exist.

After connecting with Spleen Australia many years later, Robyn became a strong supporter of the organisation and the important role it plays in helping people understand and manage asplenia. Through registering with the service, she received education and support that improved her understanding of her condition and helped ensure her vaccinations were up to date. This knowledge has enabled her to continue enjoying the activities she loves with minimal impact on her daily life.

Robyn manages her health by carrying emergency antibiotics, recognising the signs of bacterial infection, and seeking prompt medical advice when required. She also ensures healthcare providers are aware of her asplenia and values having a clear plan when travelling.

Passionate about preventive healthcare and patient education, Robyn is committed to raising awareness of the importance of communication between patients, GPs, specialists, and support services. By sharing her experiences, including presentations at Spleen Australia events, she hopes to empower others living with asplenia to take an active role in their healthcare and benefit from accurate information, ongoing education, and collaborative care.

Dr Hannah Gooding has been a valued consumer advocate and contributor to Spleen Australia since 2017. Living in Western Australia, Hannah brings both professional expertise and lived experience to her advocacy work. After losing her spleen in 2007 as a result of immune thrombocytopenia (ITP), an autoimmune condition that affects platelet levels, she experienced first-hand the challenges many patients face in accessing information, support and coordinated care. This experience inspired her to become a passionate advocate for improving awareness and outcomes for people living without a functioning spleen.

As a medical practitioner and Clinical Senior Lecturer at the University of Western Australia, Hannah combines her clinical knowledge with a strong commitment to consumer-centred healthcare. Through her involvement on both the National and Western Australian Spleen Australia Committees, she has worked alongside clinicians, researchers and health professionals to strengthen education, improve access to evidence-based information and ensure the patient voice remains central to service development.

Hannah's contributions have helped shape programs and resources that support individuals and families living with asplenia and hyposplenism across Australia. Her dedication, leadership and willingness to share her lived experience continue to make a meaningful difference, helping to improve awareness, empower patients and promote better health outcomes for the spleen community.