Ten Years On

04 Dec 2018 by Krystal Barter

The fourth of December is a date that rolls around every year, and for me, it’s a reminder to pause and take a few minutes to look back. To reflect on where I started, to recognise how far I have come and we have come, and to look forward to whatever is coming next. I suspect many of my fellow Pink Hopers have a similar date in their lives – one that is insignificant to the rest of the world, but that represents an important milestone for them in this high risk life.

Ten years ago today on the fourth of December 2008, at twenty two years old, I was wheeled into operating theatres and by choice, had my breasts preventatively removed. At that time, Pink Hope didn’t exist and apart from my younger sister – whom I was fiercely trying to protect – I didn’t know anyone else my age in Australia who carried one of these breast cancer genes.

I didn’t know it at the time, but only a few suburbs over from me another young woman in her early twenties was just two weeks ahead of me in her own preventative mastectomy journey. This woman was Krystal Barter. Through a series of chance events, we were able to meet and immediately we formed a bond that to this very day, 10 years later, remains one of the strongest friendships in my life.

When I met Krystal she was a young wife and Mum of two small boys. Her journey from awareness to genetic testing to surgery had been a more emotional one than my own, yet even back then I could sense her underlying resilience and will power to initiate change. Not only was she determined to change her genetic fate for the sake of her family, but also to drive community awareness and advocacy for high risk hereditary cancer families in time when really, we were the only ones we knew talking about it in this country.

A young Mum somewhat against the world, she opened her lap top and started Pink Hope and I proudly stood alongside her as the founding ambassador. What Krystal has taught me in the decade since is that there really is nothing stronger than a determined woman who believes to her core in what she is doing.

This journey is not one that has been easy. Not even close. But through endless hours of grit and hard work, through numerous instances of pushing forward when it seemed overwhelmingly hard, the Pink Hope team has quite literally changed the world for the high risk breast cancer community in Australia. It’s easy to look at the professionally informed website, far-reaching awareness campaigns, the merchandise and successful advocacy initiatives and think it has always been that way, but I can tell you it definitely hasn’t. Led by Krystal, the small but formidable team at Pink Hope HQ has helped to drive some big changes since the day it launched. To highlight just a few:

2012: Kicked off our very first annual Bright Pink Lipstick Day campaign. This campaign now reaches an average of 25 million people through social media alone, and grows roughly 20% every year.

2013: Pink Hope became the go-to hereditary breast cancer expert in Australia overnight following the breaking of Angelina Jolie’s own preventative mastectomy story. Calls to Pink Hope HQ increased 701%, and many of our incredible ambassadors stepped in to share their stories with minimal notice.

2016: Released a genetic testing grant program to make testing more easily accessible to those individuals who fell just outside the publicly-funded test criteria

2017: After long advocating for free genetic testing, our wish was finally granted by the Medical Services Advisory Committee on 1 November. With previous wait times of up to 2 years, and costs at up to $2000 per person, this was a real game changer.

2017: Pink Hope launched the Know Your Risk tool designed to help individuals assess their potential hereditary cancer risk. This tool continues to be one of the most widely used women’s health tools in Australia with over 40,000 completions to date

2017: We launched our ‘Be Dense Aware’ campaign which was one of the country’s most successful advocacy campaigns in 2017, reaching over 24 million media impressions. The campaign’s primary aim was to bring awareness to dense breast tissue and the risk factors associated.

Particularly in the last few years, the organisation has grown and evolved at an absolutely crazy rate but amidst the chaos, Pink Hope has never once strayed from its core mission: to help the approximately 660,000 high risk individuals in Australia know their risk and change their futures.

Unlike a decade ago, when I was struggling to find any information related to breast cancer prevention, or even to simply connect with someone similar to myself, there is now every reason that a young woman can start her high risk journey informed and supported. Pink Hope provides a wealth of knowledge and support that is easily accessible to help anyone navigate what can otherwise be a very scary and isolating time.

To me, whilst it’s important to pause, look back and appreciate the milestones of Pink Hope over the years, it’s also an opportunity to recognize the incredible strength of our community. As with every NFP, Pink Hope has a phenomenal community of ambassadors and volunteers. Their value cannot be underestimated. And for me, through the unlikely world of high hereditary cancer risk many of these people have become my lifelong friends.

Watching Krystal over this past decade has been nothing short of inspiring. So many obstacles have stood in her way, but she hasn’t faltered. Every time we talk, she’s got even bigger plans and more amazing ideas about to kick off. She never ever stops, and against many odds has become one of the most respected preventative health authorities of our time in Australia.

Cancer doesn’t discriminate, and somewhat ironically through carrying this increased cancer risk I have had the opportunity to cross paths with some of the strongest women I know. Women who have changed the world for others with no formal training, but natural talent and determination. Women who have hope, empathy, personal clarity and drive when the world hasn’t always been kind to them. Women who have, quite simply, refused to stand quietly on the sidelines of their lives. The strength of women astounds me, and Pink Hope reminds me of this every day.

The fourth of December 2018. It’s a milestone day for me. A day to be grateful, to reminisce, and to shift my focus forwards. Who knows what the next decade will bring, but I’ll tell you what, it has big shoes to fill!

Read our founder Krystal Barter’s latest blog post here. 

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