Holding on to Hope


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When I opened my computer a decade ago to start what would become Pink Hope, I truly had no expectations around what I wanted it to become, I just wanted to make sense of what my family had been through and what my children may go through in the future. I was frightened, I was confused and I no longer wanted to feel alone in what I was facing.

Navigating a risk of cancer is complex and honestly, Pink Hope was created as much for me as it was for anyone else. To this day it has filled a void – that the fear of cancer had slowly eaten away in my life for as long as I could remember.

As I look back over the last decade I remember the late nights, hard work, challenging moments and the times I was often put into situations where I questioned “Is this really what I signed up for?”. However, if you ask any business owner, entrepreneur or founder they will all say the same thing, “It was so hard but it’s so worth it!”

Establishing Pink Hope from the ground up has taught me so much. I gained grit, skills and determination because when it’s just you – (AKA – there is no funding so you can’t hire anyone) you are in charge of everything. I learnt everything from having to develop the skills on the job. I remember one time, a TV station called and said “Can we talk to your marketing manager?”. At this point I was working out of a wardrobe in my home with a lamp and a small computer. Suffice to say at that point – it was just me, myself and I.

But GOSH! I could never say it was only me that enabled its success. I have been supported and inspired by too many people to name. Where we are today isn’t just because of one person – it never was and it never will be.

It’s the endless supporters who have been with us from day one and the countless people who continue to join and support our mission for a better future every week that enable our success.

While Pink Hope may be my families legacy, it is the responsibility of us all to be a part of its future.

I have given the last 10 years of my life to Pink Hope, including considerable time away from my children and working for the first few years earning nothing or next to nothing. But this is certainly not a pity party because would I change any of it? No! It has brought me to a point in my life where I feel proud of myself and of what I have achieved.

I have done and seen things that I would have never imagined possible from – receiving a personal request to meet Angelina and Brad, becoming a published author, hosting an event at Kirribilli house, launching a genetic testing program, creating some of the countries most successful partnerships and activations in the NFP space, launching breast cancer month at NASDAQ and speaking at the counsel-generals in New York.

As much as I will always cherish those amazing moments – it’s the emails, messages and phone calls I have received over the years where people have said “you saved my life” – they are the ones I am most proud of. They are the ones that truly define my success.

Would I be the person I am today without Pink Hope? I really doubt it.

Pink Hope gave me purpose when I needed it, Pink Hope gave me a legacy that my family needed, Pink Hope gave me a chance to focus on the positives when cancer had always only shown me the negatives and most importantly it gave me hope. Hope that the future will be brighter for our next generation, my children.

I feel like I am at a point in my life and career where I am ready to venture out from my role at Pink Hope and I am looking forward to seeing what I am truly capable of and to challenge myself in other areas.

The health challenges that I have faced over the last few years have really given me a new perspective, that this life is a “once off” and we cannot go back and do it again. So I encourage everyone to look for inspiration and opportunity – and gravitate towards it.

So what does all of this mean for Pink Hope? It just means that I won’t be in our office day to day. Next year I will be handing over the operational reins to my amazing team, some of which are volunteers and staff who have been with me for over 6 years and who I trust wholeheartedly. As part of this, we are excited to announce we have a new Operations Director joining our team to ensure our vision for Pink Hope continues to grow stronger each day.

My role within Pink Hope is simply changing. I will ensure we are on track strategically, be the host at key events where needed, speak on issues for the organisation in media and mentor our new operations manager and team. I am excited to get back to the reason of why I created Pink Hope all along which is to help every Australian woman know her risk and change her future.

I believe that it’s important for every founder to realise when its “time”. My baby, Pink Hope, has made it through her toddler and adolescent years – she has wings of her own now and she deserves to see what life is like without her Mumma watching her every move. We have all been there right!?

I will still always be that 25 year old girl who got her laptop out straight after her double mastectomy determined to make my mum, my Nan and my children proud. I feel like finally in my life I have truly done that.

I wish you all a Merry Christmas and a happy but most importantly healthy 2019!

With love and hope,

Krystal. x

Read Pink Hope’s latest blog ‘Ten Years On’ here.

10 Years On…


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If you had told me when I was laying in my hospital bed at 25 years old, feeling scared and alone, that the little idea I had called Pink Hope, would become larger than life – I wouldn’t have believed you.

I still don’t believe it, but 10 years later and this is the story of Pink Hope and I.

I haven’t always felt lucky and I certainly didn’t feel in control when I found out that I carried the faulty BRCA gene. It took every ounce of my energy to change my view on my situation.

My families cancer curse defined my life in what can only be described as a constant and overwhelming sense of dread. I asked myself a thousand times, would I get cancer like everyone in my family? Was there anything I could do about it?

In 2008, having your breasts removed for preventative reasons was practically unheard of in Australia. It was considered radical and crazy and so I had to look overseas for stories of empowerment.

Was I crazy to think of removing my breasts before cancer? In Australia, at that time, the answer was – yes.

I made the decision to take control of my risk as a young mum. It was during my last high risk mammogram that the radiologist came in and said “Sorry, we need to take another image”. I thought this was standard procedure but this time it wasn’t. I was told to wait and then they rushed me to my specialist. Her exact words “Krystal, we have found changes in your breast tissue – linear lines of calcification. I want you to go upstairs for a biopsy now”.

Those were the words I had feared my whole life – biopsy, lumpectomy. My Mum had been through over 10 before they found her cancer at 36. I felt like this was going to happen to me only a decade earlier. I went pale and nearly threw up. The words burst from my mouth “I don’t care what it is. Take them. Take my breasts – I don’t want them”. In that moment, the dream I had of taking control of my cancer risk and being different from my Mum, Nan and Great-Grandmother – felt further away with every second.

The doctor said “We can fit you in for surgery in 2 weeks’ time”. I signed the paper work and that was it.

I would become the first woman in my family to choose to have her breasts removed.

While being wheeled into theatre I decided to share my story with a national TV program. I was determined that this wouldn’t be in vain – I wanted to make a difference and what a difference it turned out to be.

I woke up from surgery feeling sore and sorry for myself but a calmness settled over me in that moment. The cloud that had resided over my life for as long as I could remember had suddenly lifted. I asked my mum to pass me my computer and I started to work on what is now known as ‘Pink Hope’. A place where my hopes, dreams, support and empowerment would be able to reach women all around the country.

If anyone had told me back then that I would have a hand in revolutionising BRCA and changing the lives of thousands of high risk women – I wouldn’t have believed them. It is still hard to believe but this beautiful organisation has become a guiding light to so many for which I am so thankful.

I have tackled things in my life that I never thought I would have the courage to. From standing up in front of thousands of people and sharing my story, to standing up for women in challenging situations at Parliament House or speaking with resistant ‘experts’. Pink Hope has given me purpose, passion and resilience.

I believe whole heartedly that ‘knowing your risk’ is the foundation in which all healthcare should reside. It saved my life and I know it will continue to empower women for generations to come.

10 years on, I stand before you as a strong and empowered women. I may have lost my breasts, ovary, fallopian tubes, cervix, uterus and more – but I have re-built myself to understand that – what you can control you do and what you can’t control you try bloody hard to change. 

Krystal Barter Q&A


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Everyday I get asked similar questions about what is like to be CEO for Pink Hope, my advocacy efforts and how I maintain balance between my work life and and my personal life.

I decided to site down and channel these questions into a blog to give people an insight into what I do and my passions in life.

I hope you enjoy reading through it and if you have any other questions you’d like to submit please send them through!

With Love, KB. xx

How do you motivate your team each day?

Advocacy is at the core of what my team and I do each day.

Our goals are to ensure every individual can assess, manage and reduce their risk of breast and ovarian cancer, while providing personalised support to at-risk women.

When the fundamental reason behind our work is so rewarding it motivates my entire team to continue to work harder, because we are fighting for a worthy cause.

What has been your favourite part of being an advocacy leader so far?

Creating Pink Hope and being a part of the amazing community it has formed has been my favourite part about being an advocacy leader so far.

The influential people that I have met throughout my advocacy efforts have been amazing. But, I firmly believe that the most influential people are those who are committed to making a difference regardless of their position in life – and that encapsulates our Pink Hope members

How did you build the large, widespread network you have today?

Hard-work and determination. When I found out about the BRCA gene mutation my family carried, I was scared. But through that fear was my relentless mission to make sure that no other person felt alone if they found out they carried the same genetic fault as me.

With that vision in mind, I worked hard to create the network that I have today.

What’s a day in the life of Krystal Barter like?

Organised chaos – or so I’d like to think. I answer phone calls for interviews almost every day, respond to dozens of emails and messages, work closely with my team to make sure that our Pink Hope mission and vision is always thriving. And that’s just the start of the day!

It’s so important to me that I make time for my 3 children, husband and family. So in-between the madness of running an organisation and my advocacy mission – you may find me in the kitchen, watching my beautiful daughter showcase her dance routine or taking my boys for a walk with our family dog.

How do you juggle being a mum, a wife, running an organisation and building your own personal profile as an advocacy leader?

The saying is true, it really does takes a village! I wouldn’t be able to do what I do successfully without the support and encouragement from my loving family and dedicated team. I am so lucky to have a close circle of deeply supportive people surrounding me at all times and this helps me balance the responsibilities that come along with all of my roles.

Who inspires you?

The Pink Hope community. I cannot begin to describe how inspired I am by each and every person that reaches out to tell their story. The bravery and strength that I witness is incredible and I would not be where I am today if I didn’t have them.

What’s the biggest lesson you’ve learned in the past 10 years?

To never take life for granted and don’t sweat the small things. If you want to go on a trip to Italy – book it! You never know what’s going to happen in life so live it to the fullest every day.

What was it like meeting Angelina? 

If I had to summarise it in one word I would say, inspiring. The doors that Angelina opened up for BRCA 1 and 2 gene mutation carriers gave Pink Hope the boost we needed at the time to keep going with our life-saving mission.

She created a bigger platform by bravely speaking up about her own risk and from there, people started listening and learning more about their personal risk.

5 Steps To Take Control of Your Health


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5 Steps To Take Control Of Your Health 

 

Life has taught me that taking control of your health is one of the most important things you can do.

Over the years, I have experienced many health issues. I sometimes felt I was being “dramatic” and on one occasion I was even accused of this.  It stopped me from pursuing further information. With time, I have learnt to trust my gut instinct again and pursue answers to my questions.

The 5-Steps I’ve outlined will help guide you to feel confident and educated in the health decisions you are making and most importantly, to trust your instinct.

 

Trust Your Instinct

 

The fear of public perception can stand in the way of people taking their health seriously. Some people are even choosing to forgo visits to their doctors for fear of being perceived as ‘drama queens’.

A recent survey of 1,002 Australian women aged 18 and over, found that 41% of women agreed a fear of being labelled ‘dramatic’ would stop them from speaking up about medical concerns. Alarmingly, over 35% of these women admitted that this fear explains why they have chosen not to visit a doctor when worrying something is wrong.

This delay puts women at risk of developing further, more serious health complications.

Don’t be afraid to trust your inner voice when it tells you that something is not right and seek medical advice you might need.

 

Empower Yourself And Act

 

As women, we need to feel empowered to actively engage in the management of our health. Pursuing answers to concerns isn’t being dramatic – it’s being smart.

Continue to constantly educate yourself on your health and pursue answers to your questions.

 

Find Your Right GP

 

Don’t be afraid to speak up; seek a second opinion and get the help you need. No matter how many visits it may take, it is important to find a doctor that is right for you.

Don’t give up until you are satisfied that your health is in the right hands.

 

Get Regular Check-ups

 

It is important to make sure that you visit your doctor for a full check-up at least once a year. This provides doctors with a chance to look at your lifestyle, medical history and family history to find out if you’re at risk of any avoidable health conditions.

Regular check-ups also provide peace of mind and can save you time, effort, money and even your life in the long run.

 

Take “ME” Time

 

It’s essential to maintain a balance within your life. With things moving very quickly sometimes, this isn’t always easy. ‘Me’ time can involve a simple 5 minutes a day where you switch off and focus on what your body needs.

Practice a daily routine where you take some time out of your day to re-centre and focus on yourself.

Where I’ve Been & Where I’m Headed


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I would have laughed if someone told my 21-year-old self that one day, people would be able to Google my name and read headlines like, “Australia’s Angelina Jolie” or that words like “founder”, “author” and “activist” would be at the forefront of these searches.

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Australian women fail to seek medical advice due to fear of judgement, new research reveals


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The fear of public perception is standing in the way of the Australian females taking their health seriously. New research released today has revealed that when it comes to their health, the nation’s women are worryingly prone to ‘Drama Queen’ Syndrome – a condition of fearfulness that prevents them from exploring health concerns and symptoms because they’re worried they are ‘overreacting’.

The survey of 1,002 Australian females found that the apprehension of being labeled a dramatic is ubiquitous; nearly half (41%) of women agreed this fear would stop them from speaking up about medical concerns and, disturbingly, over one third (35%) of respondents admitted this fear would explain why they have chosen not to visit a doctor when worrying something is wrong.

Women’s Health Advocate, Social Entrepreneur, and Founder of Pink Hope Krystal Barter explains, “This research has confirmed what we intrinsically knew – Drama Queen Syndrome is rife among Australian women. The fact that we are choosing to forgo visits to the doctor for fear of being perceived as a drama queen is a distressing trend; passivity when it comes to our health puts us at risk of developing further, more serious complications.”

Medical inaction is a common tendency, with a quarter (25%) of Australian women ‘often’ worrying about their health without seeking medical advice and, even greater, nearly half (47%) who say they ‘sometimes’ do this. Sadly, only 3.5% of women will ‘always’ visit a medical professional when they are worried.

 

“I hope that exposing this trend will provide a much needed prompt for Australian women to closely consider their health and prioritise seeking a second opinion when they’re in doubt; even just taking the time to get a checkup they’ve been putting off,” says Barter.

 

Women need to become active participants in the management of their health, rather than remain apathetic, Krystal explains. As it stands, stagnation is too prominent, with nearly half (44%) of Aussie females failing to switch their GP despite feeling their doctor wasn’t taking their medical concerns seriously. The hesitancy to seek medical advice, and fear of being dramatic, could be the result of dissatisfaction with the medical advice women do receive.

However, despite the discontentment, the research has shown that the nearly half (48%) of Aussie women who do not seek a second opinion when feeling unsatisfied with initial advice should be more persistent. The pursuit of answers pays off, as nearly half (43%) of females revealed that they have had a medical professional tell them their concerns weren’t anything to be worried about, but a second opinion proved that, in fact, their suspicions were correct. Putting your health first means trusting your gut and ignoring internal anxieties to ensure your concerns are looked into and that you feel confident in the state of your health.

“In this day and age, women need to feel empowered to actively engage in the management of their health. Pursuing answers to concerns isn’t being dramatic – it’s being smart. Don’t be afraid to speak up; seek a second opinion and get the help you need. Regular checkups can provide peace of mind and can save you time, effort and even money the long run,” Krystal concludes.

Ellen McIver
emciver@we-buchan.com
0414 137 686

Kelsi Duarte
kduarte@we-buchan.com
0407 581 284

 

About the research
Women’s Health Advocate Krystal Barter commissioned Pure Profile to conduct an online survey in September 2018. The survey was a nationally representative sample of 1,002 Australian female adult respondents (aged 18+).

Additional research findings:
• In place of medical advice, nearly half of Aussie women are consulting google with their symptoms (42%)
• Over one in ten Aussie women practice avoidance when it comes to not seeking medical advice when worried there might be wrong; preferring to push their concerns to the back of their mind rather than consult a medical professional (13%)
• More than one in ten Aussie women report being too busy juggling kids to visit the doctor when they feel something is wrong (11%); work or study gets in the way for another 17% of respondents
• Over a tenth (14.2%) of females admit they have fabricated a doctor’s diagnosis to prove to others that their symptoms and concerns were ‘valid’
• Over a third of respondents note they haven’t sought out medical advice after a friend or family member told them they are ‘overreacting’ (36%)

About Krystal Barter
Imagine the devastation of learning that every single one of your female family members had been diagnosed with either breast or ovarian cancer from the insidious BRCA gene. Imagine then, learning that at the young age of 22, you too carry the gene. Such was the reality in 2009 for Pink Hope founder and Women’s Health Advocate, Social Entrepreneur and ‘Australia’s most influential philanthropist’, Krystal Barter.

After three years of navigating the choices and options available to her, Krystal made the brave decision to undergo a preventative double mastectomy to minimise her risk of cancer.

At the time of her surgery, Krystal was one of the youngest individuals in Australia to undergo this surgery, as well as one of the youngest to talk publicly about it. She shared her story with friends, family – anyone who would listen – including Hollywood superstar, Angelina Jolie.

Krystal continues to be an incredible international advocate for women’s health, with a focus on the importance of prevention and women feeling empowered to taking charge of their health.

To share her remarkable story of hope and empowerment in the face of adversity, and her powerful message to all women to prioritise their health, Krystal will be presenting at the Consul General’s residence in New York on October 1st.