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Wednesday / July 17.
HomemifeatureTaking the Macular Disease Message Global

Taking the Macular Disease Message Global

When Julie Heraghty took up the role of CEO of the Macular Disease Foundation Australia in 2004, little did she know she was about to influence the way the world would approach macular degeneration, the leading cause of blindness in people over the age of 50.Ten years on, in Australia 92 per cent of adults over 50 years are aware of the disease. In the countries of Latin America, as well as Poland and New Zealand, eye health professionals and Foundations are emulating the Foundation’s efforts, promoting awareness and early detection and working for access and affordability of treatment and rehabilitation.

A former teacher and a trained psychologist, Ms. Heraghty says when appointed CEO she drew heavily on her past experience to grow what was then known as the Macular Degeneration Foundation – a small not-for-profit – into the Foundation it is today.

“Before joining the Foundation I had been working as a senior policy advisor in the government and had decided it was time for a new challenge. I saw an advert for the position of Foundation CEO and applied. To be honest, like most Australians at the time, I had no idea about macular degeneration and the impact it had on the lives of so many Australians,” Ms. Heraghty told mivison over a cup of tea in her Sydney CBD office.

Ms. Heraghty had previously volunteered for not-for-profit organisations, been engaged with her community as deputy mayor of Manly, and with a background in government, administration, education and psychology; was passionate about outcomes that make a real difference – especially in education and health.

If we can save sight every day, by the work we do in prevention, treatment and rehabilitation, then that’s our greatest achievement

“After being offered the role of CEO, I stepped into what was essentially the unknown… it was an enormous learning curve. I had to draw on all my past learnings and experiences, not only in the workplace but also my community and policy work.”

Ms. Heraghty found working at the Foundation vastly different from the ministerial office she’d come from, where resources were far greater. However, with a small staff of two, working from a single office, she set her sights high.

“Every charity starts as a small entity with the best of intentions, but there is an enormous amount of work required to build a robust, enduring organisation. You need the right governance and the right activities, you need the right people, and funding to provide for sustainability. It’s like building a house – you lay the foundations, make sure they’re solid, then you add rooms, get the furniture in place, check the house is in good working order and then you add more rooms. Technology is the wiring in the house and in 10 years that has changed dramatically.

“Throughout I’ve been able to draw on the expertise, guidance and support of people around me, both personal networks and those involved with the Foundation. The support of amazing people like patron Ita Buttrose and Ambassadors Jean Kittson and Jan Utzon is inspiring.”

Benchmarking Integral to Success

Ms. Heraghty said a structured and strategic approach to raising awareness of the Foundation’s work has been integral to its success.

“Very early on I decided everything we did would be measured, that we would track outcomes of activities, and how we impacted the eye health of Australians.

“By clearly targeting and communicating the Foundation’s overarching key message, ‘have an eye test and macula check’, and by measuring and tracking our outcomes, we have been able to make a huge impact.

“As a result of our ongoing national campaigns, Australia now leads the world in raising awareness of macular degeneration. Our independent national polling has awareness levels for those in the over 50 at-risk age group at 92 per cent, and two out of every three people over 50 now claim to have had an eye test and macula check in the past two years. Furthermore, optometrists have told us that as a result of our work, not only has macular degeneration been detected earlier in many of their clients, but also many other eye diseases,” said Ms. Heraghty.

Broadening Horizons

In 2012 the Foundation changed its name to Macular Disease Foundation Australia and broadened its focus to cover all diseases of the macula, concentrating on what Ms. Heraghty defines as the three ‘circles’ that directly relate to the macular disease community: prevention and early detection; treatment; and rehabilitation.

“There is a massive 8.5 million people at risk of macular disease due to the ageing population and a range of other risk factors. People with low vision must have the services and support they need. So our work to educate on prevention strategies and the importance of early detection and treatment, raise awareness, support research, provide client services, and advocate for the best interests of the macular disease community are all important objectives in meeting our strategic goal – to build healthy communities in this country.”

International Impact

Ms. Heraghty’s outlook is not solely on Australia. In 2014 the Foundation helped other countries by sharing strategies and experiences with ophthalmologists and macular disease representative bodies in Latin America, Poland, Germany and Italy.

“Meeting other organisations like ours from countries in Latin America was a real privilege. They wanted to hear how we had grown the Foundation, the activities we had undertaken and our outcomes. Importantly they wanted to know how to build healthier communities and impact public health policies. Latin American countries have enormous challenges in meeting the health needs of their citizens, so it was incredibly rewarding to be able to help.

“I also had the privilege of helping three dedicated ophthalmologists from the Mexican Centre for Low Vision develop strategies for servicing patients in the public hospital system,” she said. “And I spent extra time with an amazing Foundation leader from Argentina who had been working in the area for 15 years with passion and commitment. We collaborated to enhance the work she did through a different strategic model.

“We helped many countries work through options in remodeling their own ‘house’ using an Australian blueprint as a guide,” added Ms. Heraghty.

She said, importantly, attendees at the meeting agreed upon high level principles and on the need for an umbrella organisation which represented their interests and supported their work in a real and visible way.

While the economy of Poland, and its approach to eye health were vastly different from the situation in Latin America, Ms. Heraghty said meetings were equally rewarding.

“Poland is changing dramatically. We had the opportunity to share our work, and to work with enthusiastic and committed people. There was passion, skills and expertise and a real interest in how to raise awareness – it was an excellent opportunity to work together to create something that can be sustained for the future.

“In Italy, we have had a very strong relationship for a number of years with the Italian branch of the International Agency for the Prevention of Blindness, so there was so much to observe, to learn and share.” said Ms. Heraghty. “Their National Centre of Services and Research for the Prevention of Blindness and Rehabilitation of the Visually Impaired is the only collaborating centre for visual rehabilitation recognised globally by the World Health Organisation. They are presently leading critical work on International Rehabilitation Standards, which will have important implications for our work in low vision in Australia.”

She said the opportunity to exchange ideas and experiences at an international level was “incredibly helpful and valuable” and that the relationships formed through the Foundation’s work would be relationships for life.

Proud Achievements

Ms.Heraghty said she is proud of the many achievements of the Foundation, especially in awareness raising and the fight to ensure access to registered treatment.

“The cost of blindness will always outweigh the cost of treatment and the cost of blindness is not only economic – it’s an emotional and social cost to the person, family, carers and the community. We are very proud of the fact that since 2011, the Foundation has committed over $1.5 million through our Research Grants Program. If every day we can save sight by the work we do in prevention and early detection, treatment and rehabilitation, then that’s our greatest achievement.”

She said being able to help people and make a difference is what drives her. “Having great people who share your vision; and the support to advocate for what you know is right for the macular disease community, is what sustains me in my role.

“Every day is different and always exciting – I am constantly challenged by new ideas, hard decisions and differing opinions – which is good because where everyone agrees, no-one thinks very much. We have great partners who respect our independence and support our vision, and I have great staff who are committed to the journey we have chartered. I like to think we have a great balance between a “steady as you go” approach and being innovative and able to push the boundaries to find new ways to meet our objectives,” said Ms. Heraghty.

“I think loving your job is really important – you can sustain your interest but you have to love your job – and to feel proud of what you’re doing.

“On a personal level, I feel I’ve had a great opportunity to do something really valuable. As a person who loves people, this is where it all comes together… but there are still many more horizons to conquer.”