INCA Member in Focus: The Unicorn Foundation Australia
August 02, 2017|
Every month INCA presents one of its members via an interview with the founders and governance.
This month we are glad to present Unicorn Foundation Australia by interviewing Simone Leyden who is is the CEO and Co-Founder of the organization.
When was the organization founded and how?
The Unicorn Foundation was formed in late 2009 and is the only Australian medical charity focused on NET cancers. My brother Dr John Leyden and I co-founded the foundation with the support of key medical professionals. Our NETs journey started when our sister Kate was diagnosed with pancreatic NETs and we experienced many of the issues surrounding rare and less common cancers – isolation, inexperience, lack of support, lack of knowledge and awareness. We wanted to help others going through a similar experience.
Could you summarize some highlights of projects and activity (i.e. research, information, etc.)?
Since the inception, the foundation has worked closely with medical groups to raise the profile of NET cancer and foster greater knowledge and awareness.
Some highlights include:
– Funding the CONTROL NETs (Peptide Receptor Radionuclide Therapy – PRRT) clinical trial which has recruited 48 patients, with further funding to reach 72. Seed funding the NABNEC trial for patients with Neuroendocrine Carcinoma (NEC)
– Deploying a website full of information for patients and health professionals which is updated regularly
– Funding a specialist NET oncology nurse to maintain patient support services which average over 100 contacts per month
– Formation of a Consumer Advisory Group made up of volunteers around Australia
– Organising over 36 support groups around Australia each year
– Organising NET patient forums and webinars
– Developing and distributing NET patient and Health Professional information booklets
– Receiving monetary grants and improving the recognition of NETs at a Federal Government level
– Raising awareness through World NET Cancer Day – “Let’s Talk About NETs” campaign
– Convening international medical conferences including the 4th World Theranostics Congress in Melbourne in 2016, and the Asia Pacific Neuroendocrine Tumor Society (APNETs) conference in Melbourne in November 2018
– Numerous poster and oral presentations at national and international medical conferences
– Submissions made to various HTA bodies for reimbursement for drugs for NET Cancer patients
– Reaching our $1 million NET Cancer Research Fund
– Appearing at two Senate Inquiry’s to give evidence into access to new and innovative cancer drugs in Australia, and research funding for cancers with low survival.
How do you see your future role?
Our mission is to improve awareness and knowledge of NETs within the medical profession and general public. We aim to foster patient understanding through support groups, our specialist NET Nurse helpline, patient forums and webinars and focus on raising much needed funding for research. We see our future role, as continuing to be the peak body for NET Cancer patients in Australia, to continue and grow our support services and to contributing to unique research to ultimately find a cure for NET cancer.