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Empowering Change for Invisible Illness

Published: July 07 2023

Emerge Australia CEO, Anne Wilson was on hand to speak to Ed Krutcsh of Pro Bono Australia.

Anne is an experienced Chief Executive Officer and Managing Director with a diverse track record of restructuring, repositioning and growing organisations to meet stakeholder needs while attracting investment for financial sustainability and growth.

She has worked across the education, health and varied not-for-profit sectors focussing on capacity building across key areas of advocacy, education, research and service delivery among others.

A graduate of the Stanford University Graduate School of Business NFP Leadership Program Anne’s qualifications span degrees in Human Services and Adolescent Health. In 2008, Anne was the winner of the NFP Network Association CEO of the Year award.

Active on the international stage, Anne is currently Director and Secretary/Treasurer of the International Kidney Cancer Coalition with offices in the Netherlands and the UK.

With a passion for stakeholder engagement and working collaboratively to achieve business outcomes, Anne is committed to increasing awareness, investment and improved services and support for those with ME/CFS in Australia.

You can read our interview with Anne below. To read the piece on Pro Bono Australia, visit

Describe your career trajectory and how you got to your current position.

My career began in social work before moving to the for purpose sector in community services.  That was 31 years ago. I worked in senior positions before landing my first CEO role in 1998 with Asthma Australia. Four and a half years later I was appointed CEO of the then Australian Kidney Foundation today known as Kidney Health Australia. Over 13.5 years I transitioned the organisation from a confederation of states to a national peak body.  In 2009, I became managing director of Kidney Health Australia. I also became director of the International Kidney Cancer Coalition, a position I still hold.

I left Kidney Health Australia in 2016 and started my own consultancy, filling interim CEO roles before being appointed CEO of Emerge Australia. Two years in, and it remains an honour and privilege to use my knowledge and skills to help make a difference to the lives of people with ME/CFS.  

What does this role mean to you?

This role is arguably the most important of my career in that Emerge Australia stakeholders (those with ME/CFS and now Long COVID) are among the most neglected, misunderstood and under diagnosed patient cohort within Australia’s health system.  The challenges for patients border on human rights issues. That must change and I am committed to spearheading that change on behalf of our patients.

Take us through a typical day of work for you.

Our team has a hybrid work environment. We work in the office two or three times per week and the remaining days from home.  A typical workday starts around 8.00 am with emails, responding to team messages on Slack and phone calls.  My day consists of Zoom or Teams meetings, phone calls and follow up reports and paperwork, depending on the time of year.  I prefer to attend face to face meetings.  Team meetings, business unit meetings and calls form part of most of each day as does networking with supporters and funders.  Supporting my team and ensuring that highly skilled and talented staff have what they need for optimal performance is important and I keep in touch with them individually or collectively most days. I generally finish around 5.00pm but after dinner I log on and catch up on any outstanding tasks I could not complete or get to during the day.

What has working with Emerge Australia taught you?

I have learned what an impact ME/CFS has on people’s lives. Both asthma, chronic and end stage kidney disease can be devastating diseases but at least there are treatments, clinical trials, potential pharma partners and they receive Government attention.  I have never experienced in my professional career a greater number of patients for whom the health system does nothing.  The cruelty many people with ME/CFS experience is something I was unaware of. It makes me determined to make a difference for this community.  

What is the biggest challenge you’ve encountered in your career, and how did you overcome it?

I have been very blessed. I have and continue to work with brilliant people. The biggest challenge I have encountered was being out of work for a period.  I experienced age discrimination, and I wondered if I would ever work in my profession again.  My current role has been a gift.  My skills and knowledge could not be better aligned to the needs of an organisation as they are to Emerge Australia at this time.  In between positions, I did a course in interior design and started working with a builder and discovered my creative side. It occupies most of my weekends.

If you could go back in time, what piece of advice would you give yourself as you first embarked on your career? 

I wish I had the wisdom and insight that I have today at the beginning of my career.  I would tell myself to listen more and talk less.  I would tell my younger self that I am capable and I would encourage me to be more confident in my ability to succeed.  I would laugh often, never lose my sense of humour, and not take myself too seriously.

How do you stay motivated to work in this field?

My motivation comes from the smiles and encouragement I receive from those I am here to serve.  I believe in servant leadership – not so popular with many  – but I feel very humbled in my role as a CEO. I always have. Knowing that I come to work every single day and what I and my staff do makes a difference to the lives of people with ME/CFS makes me determined to succeed.  I am tenacious, determined, and confident we will succeed.  I laugh often and don’t take myself too seriously. 

How do you unwind after work?

Depends on the weather.  Go out to dinner with friends, listen to music, go for a walk or on weekends I have a few interior design clients I work with occasionally.  I love going to see a good movie and hang out with my besties. A few of us are walking in Run Melbourne on July 16 to raise money and awareness for Emerge Australia so I am preparing for that.

What was the last thing you: Watched, Read, & Listened to?

I am a hopeless romantic, so I watched Father of the Bride with Andy Garcia and Gloria Estefan. Great movie.

I am just reading:  Brene Brown’s book, The Gifts of Imperfection:  Let go of who you think you’re supposed to be and embrace who you are. A guide to wholehearted life. Love it!

I just listened to a World Kidney Cancer Day webinar on living well with kidney cancer.

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