Subscribe to our
Subscribe to the Unicorn Foundation e-Newsletter and become a Friend by entering your details in the spaces provided. Friends will be kept informed on the progress we make and how the donations are being allocated.
A message from Simone Leyden CEO, and Co-Founder of the Unicorn Foundation and current President of the International Neuroendocrine Cancer Alliance (INCA).
The Unicorn Foundation is the only Australian not-for-profit medical charity focused on neuroendocrine tumours (NETs). The Unicorn Foundation was co-founded in 2009 by myself and my brother Dr John leyden (Chair), due to the experience we had with our sister Kate's diagnosis of pancreatic neuroendocrine carcinoma and liver metastisis.
Our role is important to the lives and outcomes of Neuroendocrine Cancer patients around Australia, and around the world, and one that we never take for granted. Everything we do, through all the activites and projects we implement, we stick to our clear mission to: assist and support patients and carers; lobby for new, appropriate treatments and investigations; raise awareness and knowledge of NETs within the medical community and general public; and encourage and support Australian research in the area of neuroendocrine cancers.
Neuroendocrine tumours (NET) by their very nature are less common, complicated, disguise themselves behind common symptoms such as IBS, asthma and anxiety, which leads to misdiagnosis and years of anguish for our patients. This misdiagnosis combined with the lack of resources, support, clinical trials and treatments available to our patients makes our job a big one, and one that we tackle with our enthusiastic team, volunteers and supporters to the best of our ability. Our ultimate goal of finding a cure for Neuroendocrine Cancer makes us work that bit harder each day.
Fortunately, the Australian medical landscape is changing with regards to neuroendocrine tumours with many physicians (Oncologists, Endocrinologists, Gastroenterologists, Radiation Oncologists), Surgeons, Radiologists and Nuclear medicine physicians gaining experience and knowledge. We appreciate the commitment, compassion and hard work provided by our specialists and value the partnership we have with them in improving the lives of NET patients.
We at the Unicorn Foundation have many exciting projects we are currently working on, including a GP education pilot project, the formation of a national NET clinical registry and associated patient research mobile app, growing our specialist NET nurse support services, continuing the funding of the CONTROL NETs clinical trial, convening the Asia Pacific Neuroendocrine Tumour Society (APNETs) in Melbourne in November, and continuing to advocate for equitable access across the country.
In my role as current President of the International Neuroendocrine Cancer Alliance (INCA), an organisation with 20 NET patient member organisations from around the globe, we are working on projects that will close the gaps we have identified around global unmet needs of NET patients. These fall under access to treatments, patient information, patient's in research and raising awareness about NETs through activities including NET Cancer Day on November 10. Watch this space as we launch our new website very soon.
We thrive on results as an organisation and could not do all of this without your support and dedication and for this we thank you. Special thanks also to our wonderful team, NET nurse Kate Wakelin, project officers Linda Ryding and Meredith Cummins, our board, our Consumer Advisory Group, patient support group facilitators, patients and their families. Together we will find a cure to neuroendocrine cancer.