I am Siobhan and I am a long-term patient (20+ years), cancer charity founder, patient advocate, wife and mum of two teenage boys & hairy daughter, (aka our dog Pixie)
The reason I started Care Box actually starts way back when I was 25 years old and I was diagnosed with a hereditary cancer syndrome called M.E.N. Type 1. This genetic syndrome was passed down to me from my father who died from it when he was 44, and I was just 3 years old. Over the years I have undergone numerous surgeries to remove parts of organs that were growing these tumours, and I will face more surgery and treatments in the near future.
When I was facing my first big surgery, I really wanted to talk to other patients about their own experience, especially about their recovery time. But there wasn't any organisation in NZ that even knew about these type of tumours, let alone gathering patients together. I was frustrated by the lack of patient support, so I founded Unicorn Foundation New Zealand (now Neuroendocrine Cancer Foundation NZ) to support and help patients and families affected by Neuroendocrine Cancers. And boy did we achieve a lot ! In 2015 we fundraised to establish a key type of diagnostic scan called a Gatate PET-CT for the first time in New Zealand, (this scan has also helps thousands of Prostate Cancer patients too, called PSMA). We also lobbied government agencies to establish a life extending treatment called PRRT which is now available to all New Zealanders. This treatment is also helping prostate cancer patients too. I also set up a free national support service for patients that continues to this day.
Throughout these experiences, it has have given me a unique life perspective, teaching me the importance of timely treatment and support and how powerful it is to have someone in your corner during the tough times.
Care Box is a way to facilitate meaningful interactions, to ensure no one feels isolated in their own journey. So when you know someone is having a challenging time, it's important to remember that you can’t fix what they are going through but if they know you are there for them - it will help them immensely.
Care Box is here to make it easier for you, to be there for them.
In the News
Neuroendocrine Cancer Research Articles I have assisted with :
Consensus-Derived Quality Performance Indicators for Neuroendocrine Tumour CareUnmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals