Providing peer support for New Zealanders impacted by hereditary breast and ovarian cancer
We are a small, voluntary organisation with big goals and dreams.
Our focus over the last five years has been -
2010 - 2011 - Establishment (ensure we are set up to support New Zealanders with up to date and easily accessible information)
2012 - 2013 - Support (create forums and opportunties for people to connect with one another to care and share)
2014 - 2015 - Sustainability (develop an operating model that will future proof us and ensure our existence for many years)
Annually we strive to -
Our values are knowledge, ease and collaboration
because it’s so powerful. It can save a life.
because we believe it should be.
because we can all achieve more together.
To learn more about us please explore our site. This site is for everyone impacted by hereditary breast and/or ovarian cancer. If you would like to share your thoughts and ideas on how we can make this worthwhile please send them to firstname.lastname@example.org
A little bit about me
My name is Nicola I'm 39 years old and have the BRCA1 gene mutation. When I found out about the gene, I considered it a Gift of Knowledge. I felt like I at least had some control. Within 10 months of finding this out, I had a double mastectomy with a Deep Inferior Epigastric Perforator (DIEP) reconstruction. My new breasts aren’t perfect (my real ones weren't either), but they are close to it and I am really happy with them. I have no regrets. I am now planning to have a prophylactic oophorectomy (removal of my ovaries and fallopian tubes). I am finding this decision hard. Early menopause scares me. We have planned our family around this operation so have had three children in the last three years.
Together with my Dad I nursed my terminally ill Mum through ovarian cancer. I couldn't help but think throughout "We shouldn't be doing this....we should have been more informed about BRCA and done something sooner". Mum fought hard, so hard, but passed away in 2011.
The things that are important to me are my family, and doing as much as I can to make sure no one else dies unnecessarily due to hereditary breast and ovarian cancer.
People I admire are those who make a difference, the wonderful medical team I have had access to here in Christchurch, all of the medical professionals dedicating their life to keeping people alive and well, those who work tirelessly to raise awareness for causes close to their heart and my Mum because she was so brave, despite all that she went through she never lost her humour and always had a smile on her face.
My view on BRCA? It changes. Some days I hate it, but mostly I'm grateful for it. I do have an overwhelming desire to beat it and to help others beat it. I'm excited about the number of people around the globe working hard to find new treatments and screening techniques for the next generation. I truly believe it's a personal journey, there's no right path and because of this, knowledge it crucial. If you have knowledge you can make informed decisions.
Why I created The Gift of Knowledge
In 2005 BRCA became part of my families’ vocabulary. Thankfully.
I didn’t understand what it meant so I ignored it. In 2006 we learned that my Mum had this gene and also ovarian cancer. I became a little more interested. But I searched for information and couldn’t find any so ignored it again. Mum’s cancer didn’t go away, in fact it spread. Watching Mum go through chemo was increasing my interest in finding out more about this gene. I didn’t know where to start. In the end my sister booked us in to see a Genetic Specialist. Three months later I found out I was BRCA positive. Cool, now what? I struggled to find relevant information that helped me understand my options and learn more about the advancements that were being made in relation to screening, prevention and/or treating this cancer. I was lucky enough to receive a scholarship through the FORCE foundation and funding from the Lotteries Commission to attend a conference in Orlando, United States covering everything imaginable relating to BRCA. It was incredible and empowering. I came home wanting all New Zealanders to have access to this information; feel supported in their own country and have a local ‘place to go’, hence the creation of The Gift of Knowledge. We know have our own conferences! Check out our 'Come along' section on this site.
I have named it The Gift of Knowledge because that is how I see it. Had I not been given this information I would not have the choices I have today.
Our name and logo
The name The Gift of Knowledge came about when I was trying to describe how I felt about testing positive. Having this knowledge felt like a gift. The outline of the gift box, represents a strand of DNA. The grey writing represents ovarian cancer and the pink writing, breast cancer.
Meet others who are involved
Coming soon… but in the meantime a huge thanks to:
- GlassTower Communications, for creative ideas and motivation
- Matt at Activate Design, who was tremendous in helping me create this website within two weeks and responds to all of our requests so quickly
- Our wonderful Regional Coordinators who provide local support throughout New Zealand
- Everyone of you who email me with encouraging words
Coming soon…we will be sharing the views of our Medical Professionals on everything BRCA/high risk related.
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