Anita Parise has been on a mission to bring attention to the fact that the prognosis for patients with glioblastoma (GBM) has not improved in over 30 years. A common adult brain cancer, GBM is the topic of work being done by ACQI, including through collaboration on the national “FIG” trial of using FET PET imaging for improving prognosis (ANZCTR Trial ID: ACTRN12619001735145). Anita is determined to see research into this disease increase, even showing her own willingness to sacrifice for the cause by shaving her hair and raising funds for the UWA Medical Physics group and ACQI. Anita shared her family’s story at our recent symposium, and has given permission for the transcription of her presentation to be presented here. We are extremely grateful for the support of Anita, her family and her backers.
Good morning. My name is Anita Parise. I am not anyone of medical or academic significance, I am a wife and mother. I can see you might be wondering why I am here and what it is that I have to contribute to this symposium. I am on a mission to end terminal Brain cancers in Australia by raising awareness and directing funds into the right hands.
I’ll start by saying this; we are only guaranteed one thing in life, and that is that we each have a one-way ticket out. Over the past 8 months, I have come to realise something else… something that I will say quite confidently today, that we can almost certainly guarantee that everybody in this room has or will have been affected directly or indirectly by a form of cancer in this life.
My story is of a personal nature. On the 17th of June of this year, life as my family knew it changed forever. My husband, Anthony, was given a GBM diagnosis. This was the worst day of our lives. A million thoughts rushed through my brain. How could this happen? Why is this happening to us? How are we going to manage this? And so many more thoughts as you’d imagine. I felt helpless… I didn’t know how to ‘fix’ this myself. I had a need to know as much information as possible about this disease and what it was going to do to my husband and our family.
There were a few things I learnt over that week or so… the most incomprehensible was how could something like this in today’s modern society of medicine and technology still be so devastating for so many. The next thing I learnt was to not buy into the statistics you get given or read about on the internet. If you’re unfamiliar with these stats, I’ll give you a brief run down. 1 Australian is diagnosed with a form of Brain Cancer every 5 hours. 80% of those will not survive past 5 years. These statistics have not changed in over 30 years.
What I was hoping to find was more information about the variables in those statistics. The good news stories. The people who defy those odds and the published progression with all types of research and treatments available. We had to figure this out on our own. We discovered that there are in fact variables and there are people who sit outside the ‘average’. We have chosen to sit well above that average.
Right from the get-go, Anthony has displayed a positive attitude and willingness to prove to everyone he will fight and beat this disease. Don’t get me wrong, there are days that those statistics make their way into our thoughts and play on our minds. I hate that a bunch of numbers have the power to potentially alter one’s thoughts that much that they believe they are only as good as a number they’ve been given.
Whilst Anthony was recovering from his surgery, we tried to be positive. It was hectic – with family and friends all coming to visit and us repeating the same story over and over, explaining the disease and they type of tumor he had was very draining. I realised in those moments I needed to talk about positives, I needed to change the conversation and direct it into positive talk. I needed to occupy my time positively. I had a desire to help, to be apart of a greater solution. As I am not a scientist, or medical expert the only avenue I had was to help the people that do have those qualifications to turn these statistics around. So, the idea of holding a fundraiser was born.
Anthony has always been an extremely outgoing and positive person. You’d be hard pressed to find anyone who will tell you otherwise. He is very well respected in the Electrical Industry in Perth. So, I knew that through our networks of colleagues, friends, and family I could generate some fundraising interest and have 100% support from them.
In my search of trying to find a suitable charity, as this was the only way that I knew at the time that I could fundraise, I discovered that most of them are in fact not NFP’s. That they are very well-oiled machines, huge business’s some of which will keep over 25% of your donation. Some of them couldn’t even tell me where the funds that I would donate would end up going. This really didn’t make sense to me. If anything, it made me certain that I had to find somewhere that 100% of my donations went directly into the right hands. After exhausting all my options, I contacted our Brain surgeon Professor Christopher Lind for some guidance – he put me in touch with one of his colleagues, Dr Suki Gill as he was running a clinical trial on Glioma’s. I was so grateful to have had a meeting with him and to be able to discuss his research and how we could potentially contribute in some small way. I explained to him my plans. I was holding two fundraisers simultaneously. I was gifted 600 beanies that I sold to our networks, and I also held a head shave event, where myself and others shaved our heads. After some discussions we decided that for all the cash donations that we raised, they would be best directed to the Medical Physics department of UWA. A few weeks ago, we were honored to have met some of the researchers and present them with a check.
I am passionate that we can make a difference to families suffering from a GBM diagnosis, in fact any cancer for that matter. I want to see bridges connecting local government, philanthropists, and everyday people within our community to researchers right here in WA. Every small contribution to research will help someone with a terminal diagnosis that could possibly turn into a prognosis that is very treatable.
We have some of the brightest minds right here in WA, they just need the grants and funds to turn ideas into research, research into trials, and trials into standard of practice.
Funding for research is the most valuable investment we can all make. I’m certain that the people that will make a difference to how cancer is treated in the future are sitting right here in this room. My pledge is to deliver this message far and wide, and to continue in our philanthropic efforts to gain as many funds as possible so we can collectively find better and new ways of treating cancer.
I’d like to thank Dr Martin Ebert and Dr Ros Francis for inviting me to speak today to all the researchers and doctors who are tirelessly working to find a better way of treatment and to all of you for listening.