FSHD global research foundation

Bill Moss AM
Founder & Chairman

Bill Moss AM is a highly respected Australian businessman, philanthropist and sufferer of muscular dystrophy.

Bill spent 23 years as a senior executive and Executive Director with Macquarie Group, the pre-eminent Australian investment bank, where he founded, grew and led Macquarie Real Estate Group to a point where it managed over $23 billion worth of investments around the world.

In 2007, Bill Moss AM left Macquarie to pursue philanthropic initiatives which included establishing the FSHD Global Research Foundation, Australia’s first not-for-profit organisation focused on finding a treatment or cure for Facioscapulohumeral Dystrophy (FSHD) of which Bill suffers.

Bill participated in the Australian Government’s Australia 2020 summit while also joining the Government’s Disability Investment Group.

Bill currently Co-Chairs the Territory 2030 Steering Committee and is a member of the ASIC External Advisory Panel.

Bill Moss AM regularly features in the Australian media, providing comment on the finance and banking sectors, the global economy, and the ongoing need for Australia to do more to advance the interests of the country’s disabled and disadvantaged.

In 2006, Bill was awarded one of Australia’s highest honours, the Order of Australia (AM), for services to the banking, finance, and charitable sectors.

Bill is also highly sought after on the lecture circuit for his commentaries on the general economy and social justice.

Professor John Rasko
Director & Chairman, Scientific Grants Review Committee

In 2004 Prof. Rasko led a team that identified the gene for Hartnup Disease reported in Nature Genetics. He has championed gene therapy for haemophilia with collaborators in the USA, published in Nature Medicine papers.

He serves on national committees, editorial boards and grant review panels. He has authored ~100 publications and co-edited a book published by Cambridge University Press on the ethics of inheritable genetic modification.

He is a highly sought speaker and is active in fundraising for biomedical research.

Michael Zahn
Director

Michael has several years’ experience in communications and marketing, with particular expertise in issues management, crisis management and marketing communications.

Over the last three years Michael has been involved in some of Australia’s largest and most complex public relations campaigns, representing some of the country’s most well-known organisations.

Michael has developed and run a number of public relations exercises in the emerging economies of China and Russia and continues to have a strong interest in this area.

In 2006 Michael was asked to deliver a lecture on public relations at Macquarie University.

Of late, Michael has taken a keen interest in helping Australian not-for-profit organisations with communication strategies and fundraising.

Dr Alan Watts
Director

Dr Alan Watts has had an extensive career, with experience in the fields of science, business and technology. Alan has an Honours degree in Science, for which he majored in Chemistry and Genetics, and he completed his Doctorate in Molecular Immunology at the University of Sydney.

Alan has experience in the general field of molecular immunology and cytokines, and practical experience with proteomics. Alan has published a number of papers and is named on several patents.

Alan’s career has seen him in many varied positions, including a post-doctoral position at the Weizmann Institute, Israel, as Scientific Director of a Sydney-based biotechnology company, and in the commercial division of pharmaceutical company Merck Sharpe and Dohme. Additionally, Alan has experience in business development, particularly in the context of start-up companies.

Alan currently holds the position of Medical Manager in the Medical Department of US pharmaceutical company Abbott. In addition to FSHD Global, Alan gives his time to two not-for profit organisations, in his role as Trustee of the Wenkart Foundation and Director of a licensed sporting club.

Dr Lucy Burns
Director

Dr Lucy Burns is a General Practitioner, business woman, entrepreneur and mother, and has FSHD.

Lucy was diagnosed with FSHD at the end of her first year of medical school. She went on to complete her medical degree as well as a diploma in obstetrics and gynaecology and has a Fellowship of the Royal College of General Practitioners.

Lucy has been working as a GP for the past 15 years and currently works with the Defence Force at HMAS Cerberus. Lucy also owns and runs an online company called Better than Flowers, which delivers chocolate gift bouquets around Australia, in addition to running the volunteer organisation Australia’s Biggest Book Group, an online book club. Lucy donates all the profits from her business ventures to research into FSHD.

Lucy is a highly sought after public speaker and she has been greatly successful in raising the public profile of muscular dystrophy and FSHD within the community.

Barry Robinson
Director

Barry Robinson has been CEO & Managing Director of Wyndham Vacation Resorts since 2003. With 1200 staff, Wyndham Vacation Resorts Asia Pacific is the region’s leading and largest vacation ownership company.

Born in New Zealand, Barry’s formative years were spent at several independent hotels and resorts. During this time, Barry built a reputation as one of New Zealand’s leading resort managers. He was one of the youngest General Managers with Quality Inns, NZ, when he managed Quality Hotel Dunedin at 27 years of age.

Barry has held a variety of senior positions across Asia with industry giants including Swiss-Belhotel International and Swissotel Worldwide Partner Hotels, and was Managing Director Asia Pacific for Choice Hotels International.

As CEO & Managing Director of Wyndham Vacation Resorts Asia Pacific, Barry has been the driving force behind many significant business practice innovations that have resulted in new sales and customer satisfaction records.

John de Mestre
Director

John has practiced as a solicitor in Sydney for over 20 years, 12 of which have been as Principal of John de Mestre & Co. Through his practice he has been involved with many and varied areas of general practice including sports, family and commercial litigation.

John has a particular interest in sports law. He has acted in a number of high profile sports matters. He is also a regular presenter of seminars and papers in the area of sports law.

John brings with him a vast knowledge and experience within the legal profession and ideas for FSHD Global.

Associate Professor Andrew Kornberg
Director

A/Prof Andrew Kornberg is a paediatric neurologist with considerable neuromuscular experience. He completed Paediatric Neurology and Neuromuscular Fellowships in St. Louis, USA and is currently the Director of both Neurology at the Royal Children’s Hospital, Melbourne, and the National Muscular Dystrophy Centre at the Howard Florey Institute

Andrew has major clinical and laboratory research interests in the muscular dystrophies and immune-mediated neurologic syndromes. His Directorships have been very productive, with national and international grants being received for research into novel genetic therapies in muscular dystrophy.

Andrew has been asked to speak at Washington University in St. Louis at Grand Rounds and was an invited member to the European Neuromuscular Centre Workshop in the Netherlands. He has given many invited lectures in Australia and the Asia-Pacific region on immune mediated neurologic syndromes and other neuromuscular disorders.

Andrew is the senior editor of a wholly written Australian Neuromuscular textbook, which is nearing completion.

James Wakim
Director

Beirut Hellenic Bank Australia’s Managing Director & CEO, James Wakim has been a respected identity in Australia’s banking and investment community for over twenty years. He is a career banker with experience across a broad portfolio of banking sectors including marketing, credit, international and corporate.

James’s ability to combine in-depth industry knowledge with excellent communication and people skills enabled him to successfully run the Arab Bank Australia for over a decade prior to commencing his current role.

In addition to steering Beirut Hellenic Bank Australia’s financial success, James plays an active role in its community support programs. He held positions on the advisory Board of the Menzies Centre for Health Policy and on the advisory Board of the Westmead Millennium Institute for eight years.

Further to this, James was a Director of the Westmead Medical Research Foundation (previously known as Millennium Foundation) for over ten years, a charity for which he was also Chairman of the Board for over five years. James has been personally responsible for raising about $1 million for this Foundation from the general community.

In 2008, the International publication ‘Executive PA Magazine’ awarded James ‘Boss of the Year’.

He is married with three adult children, and is a proud grandfather.

Natalie Moss
Director

Natalie has delivered a variety of creative and inspiring events for the corporate and not-for-profit sector. With a passion for philanthropy, Natalie has created and managed several Golf Tournaments, The Sydney FSHD Lindt Chocolate Ball, a Chateau d’Yquem luncheon and a cocktail party for the Foundation to assist in the quest to find a treatment or cure for Facioscapulohumeral dystrophy.

With strong interests in event management in 2010 Natalie founded Champagne for Charity, a popular networking society for women which raises money for an array of transparent charities, and has established herself as Director of Events in a public relations company ZMM.

Natalie brings a wealth of creativity and energy to the Foundation.

James Harvey
Alternate Director

James Harvey is a Private Client Adviser with Macquarie Private Wealth and has FSHD. Prior to joining Macquarie Private Wealth, he spent 5 years working with Macquarie Funds Group specialising in the development and distribution of Macquarie Managed Funds and structured products. His focus is on building high quality, long term relationships with clients and helping them achieve their objectives with the greatest amount of certainty, and the lowest amount of risk. He is an accomplished public speaker, and regularly provides investment and market commentary in the media and other public forums.

Prior to the onset & diagnosis of FSHD in 2009, James was a dedicated triathlete and sportsman. He has applied the same commitment and focus to a new challenge – that of raising the public profile of muscular dystrophy & FSHD within the community.

Andrew Rigney
Company Secretary

Andrew Rigney is a partner of B P Woodward & Associates, Chartered Accountants in Sydney and is a member of the Institute of Chartered Accountants in Australia. Andrew holds a Bachelor of Commerce degree from Macquarie University and is currently studying his Diploma of Law through the Legal Profession Admissions Board. Andrew holds a number of directorships in private companies and charitable foundations. Andrew is also a sworn Justice of Peace in New South Wales.