ABOUT US


Board of Directors


  • Bill Moss AO

    Bill is an Australian businessman and philanthropist with expertise in real estate, banking, funds and asset management.

    Bill spent 23 years as a senior executive and Executive Director with Macquarie Group, the pre-eminent Australian investment bank, where he managed The Global Banking and Real Estate businesses. Bill founded, grew and led Macquarie Real Estate Group to a point where it managed over $30 billion worth of investments around the world.

    Bill Moss was responsible for creating and building businesses in the areas of real estate investment, property funds management, finance and banking, tourism and leisure, and mortgage banking.  At the time of his resignation in December 2006, the business had grown to over 1,400 staff, located in USA, Europe, UK, Japan, China, Hong Kong, Singapore, New Zealand and Australia, which led to one of Macquarie Group’s most profitable businesses. Bill has been a director of eight listed property trusts and one listed infrastructure trust.

    Bill was the Co-Chair of the Territory 2030 Steering Committee and part of Australia’s 2020 summit.

    Bill is a commentator on the Australian 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.

    Having donated his time over 30 year period to being a Founder, Director and Patron of some fourteen charities and community groups, in 2015, Bill was awarded one of Australia’s highest honours, Office of the Order of Australia (AO), for services to the banking, charity, and finance sectors.

    Bill is currently Chairman of Moss Capital, Chairman of Boston Group of Companies and non-executive director of Elanor Investments Pty Ltd. Bill is Chairman and Founder of The FSHD Global Research Foundation.

  • Natalie Moss

    Natalie Moss is an entrepreneurial philanthropist at heart. Having grown up with FSHD in her family, she is burning to finding treatments and an ultimate cure for FSHD. Her infectious passion, professionalism, expertise in the field and personal story drives her and her team to fight to improve the quality of life for people living with this muscle wasting disease.

    Volunteering for the Foundation since its establishment, she recently took reign as Managing Director, and in a short period of time has been quick to achieve, innovate and motivate, setting a new tone, pace for research, brand and voice to the award winning charity – changing the culture of giving, bringing transparency and accountability to the sector, and dramatically increasing fundraising and community engagement, expanding world class medical research by 35% within her first year: driven to improve diagnostics, therapeutics and clinical trials for FSHD.

    Hope is what drives the community to survive. The community drives me to provide the hope for a cure”.

  • James Wakim

    Mr Wakim has over 33 years of experience in the financial services sector. He was founding manager of and then ultimately CEO/MD of the Arab Bank Australia Limited, culminating most recently as CEO/MD of Bank of Sydney Limited. Previous positions include Chairman of the Board of Gulf Energy Ltd. James has devoted many years to philanthropy and medical research and is Life Benefactor of Westmead Medical Research Foundation. He is currently non-executive Director of Seachange Technology Holdings Pty Ltd.; Independent Director, Vice Chairman of FSHD Global Research Foundation Limited (FSHD); and Member of the Management Board Marie Bashir Institute for Infectious Diseases and Biosecurity (MBI), part of Sydney University, facilitating research into emerging and re-emerging infectious diseases within Australia and Asia Pacific nations. Mr Wakim has been an Advisory Board Member of Menzies Centre for Health Policy and The Westmead Institute for Medical Research, as well as Chairman of Westmead Medical Research Foundation Ltd., and Commissioner Board of Commissioners, Ethnic Affairs Commission. He is a Fellow of the Australian Institute of Company Directors and a Senior fellow of the Financial Services Institute of Australasia. Mr Wakim joined the CMRI Board of Directors in May 2016.

Scientific Advisory Board


  • Dr Alan Watts Chairman
  • Bill Moss AO
  • Natalie Moss
  • Prof Monique Ryan
  • Stephen Tapscott
  • Pradnya Dugal
  • Prof Baziel van Engelen
  • Charles Emerson
  • Prof Alexandra Belayew
  • Dr Scott Baker

Core Team


  • Natalie Moss Managing Director

    Natalie Moss is an entrepreneurial philanthropist at heart. Having grown up with FSHD in her family, she is burning to finding treatments and an ultimate cure for FSHD. Her infectious passion, professionalism, expertise in the field and personal story drives her and her team to fight to improve the quality of life for people living with this muscle wasting disease.

    Volunteering for the Foundation since its establishment, she recently took reign as Managing Director, and in a short period of time has been quick to achieve, innovate and motivate, setting a new tone, pace for research, brand and voice to the award winning charity – changing the culture of giving, bringing transparency and accountability to the sector, and dramatically increasing fundraising and community engagement, expanding world class medical research by 35% within her first year: driven to improve diagnostics, therapeutics and clinical trials for FSHD.

    Hope is what drives the community to survive. The community drives me to provide the hope for a cure”.

  • Natalie Livet Acting CEO

    Natalie comes to the Foundation to head up our Operations arm. With a background in both operations and client relations, she is now the driving force behind ensuring the Foundation runs efficiently and effectively. You will usually find Natalie answering emails while talking on the phone and directing staff all at the same time.

  • Jason Irvine Director of Corporate Relations

    Jason has had long and distinguished career in the printing industry for 13 years during which time he held management positions in Lithographic from 1990 to 2005.

    Jason has been involved part time and full time in sporting administration and management roles in the last 15 years, including roles with Balmain Tigers, Parramatta Eels, Cronulla Sharks, Roosters, NSW State of Origin and Australian Rugby League as Welfare Manager.

    In 2015 Jason became a director and shareholder of Boston Leisure and Tourism Pty Ltd where he serves as Chairman, a company with a focus on developing new products within the Tourism sector.

Patrons


Jamie Durie

International award winning designer & author Jamie Durie started his design practice 16 years ago in 1998. Since then he & his team at Durie Design have received over 33 international design awards with his latest design accolade received in May 2014 when he was awarded the New York Design Award for his interior dining chair titled, The Tubular Chair. The Bungalow Armchair in hand woven leather was also a finalist. Jamie splits his time between design studios in Sydney and Los Angeles, and has worked on many Hotels, Resorts and commercial projects over the last 15 years spanning 17 countries.
Although the practice started in the field of landscape architecture, Durie Design has evolved today into a multidisciplinary design practice in areas of architecture, interior architecture, landscape, & his greatest passion, furniture design. Durie’s first furniture collection was designed & created over a decade ago in 2003 & has since retailed in over 200 department stores throughout Australia. It continues to sell today in over 12 countries with his latest collection for renowned Milan-based Italian furniture manufacturer RIVA1920 launching in 2013. Since then the collection has doubled with the Elle Ecrit Desk being commissioned by all RIVA1920 USA retail outlets.
Jamie is a committed environmentalist working with numerous organisations dedicated to conservation. In honour of his work over the last two decades, Jamie was awarded the Medal of the Order of Australia in 2013 for services to the environment & design, while in 2004, he received the Centenary Medal for services to the environment, television, & the community.
Jamie has supported the Foundation from its establishment in 2007 and has played a significant role hosting the Sydney Chocolate Ball every year.

Luke Mangan

Luke Mangan is a leading Australian restaurateur and chef, whose influence on the food and wine industry can been found across five countries, 17 different restaurants as well in the air on Virgin Australia Business Class and at sea, on board five P&O cruise ships.
Internationally regarded as a leading example of Australia’s culinary culture, Luke’s restaurants range from casual to fine dining establishments and share a consistent philosophy of showcasing the relationship between Australia’s finest ingredients in a clean and contemporary manner. As co-founder of Australia’s largest hospitality awards program, the Appetite for Excellence program, Luke is also extremely passionate about promoting and enabling the development of young chefs, waiters and restaurateurs in Australia.
From a family of seven boys who grew up in Melbourne, today Luke resides in Sydney yet is constantly found travelling to visit his restaurants, staff and customers from around the world.

Justin Reid

Justin is a Patron of FSHD Global. Diagnosed with FSHD at age 12, Justin has an incredible outlook on life, despite the complexities of living with FSHD. He sends a positive message that anyone can achieve great things in life if they can learn to overcome their doubts and fears.

Ambassadors


  • Rochelle Collis

    Rochelle Collis, together with her partner Zoya Wong, own and operate one of Sydney’s busiest cosmetic franchise clinics at Laser Clinics Australia, Bondi Junction.

    Rochelle Collis continually advances her knowledge of skin rejuvenation and cosmetic injections to enhance and maintain a person’s natural youthful appearance. Taking ownership of Laser Clinics Australia’s clinic in Bondi Junction in 2012, Rochelle’s invigorating passion now ensures that the clinic trades as one of Sydney’s busiest.

    Rochelle is a devoted executive woman, managing an average of 650 clients per week, 20 staff and 5 cosmetic injectors.

    Laser Clinics Australia specialises in providing tailored non-invasive treatments that leave you looking your natural best. For full-face rejuvenation, a combination of skin treatments such as Dermal Stamping with Fractional Radio Frequency, skin peels, laser pigmentation removal, and cosmetic filler and anti-wrinkle injections, will leave your skin looking flawless.

    Dedicated to driving a new kind of laser, skin and cosmetic clinic, Rochelle has reinvented and reimagined the way in which women and men can go about improving and maintaining their appearance. A desire to provide exceptional client service’ directs her focus with a determination to stay a leading provider in skincare and well-administered cosmetic injections.

    Rochelle says “Consumers want results but most of all they want value.

    Rochelle has an impressive 14 years of pharmaceutical experience under her belt, in which she developed comprehensive knowledge of anatomy and skin physiology. Between 2006 and 2012, Rochelle worked for international leading manufacturing company Q-Med, the makers of Restylane, in the role of account manager and product portfolio trainer.

    This role involved ensuring that proper examination of facial aesthetics lead to nourished skin. She trained medical professionals on the range of Restylane of fillers, skin boosters and skincare to meet market trends and patient desires, including that of filling out wrinkles, increasing fullness in the lips or face, hydration and overall rejuvenation of the quality of the skin.

    Rochelle’s skill was cultured from many multiple national and international scientific and aesthetic symposiums. Rochelle worked with University Anatomists, International Plastic Surgeons as well as local Cosmetic Injectors to establish and disseminate new techniques. She adopted new pricing strategies and implemented consumer campaigns on a national level, an experience that has structured the way she runs her clinic to suit the needs of the client.

    Rochelle’s de facto partner Babak Moini is the founder of Laser Clinics Australia, Skinstitut, The Cosmetic Institute and Smile Dental Clinics. Both Babak and Rochelle live and work their life’s passion in the cosmetic industry.

    Not one to sit back, Rochelle seeks the latest technologies and techniques, and provides the key information to keep treatments up-to-date and at an affordable price. She has become a thought leader for the cosmetic industry.

    Laser Clinics Australia has been able to offer cosmetic treatments to the masses because of our affordable pricing and dedication to a quality service and result. Quote Rochelle

  • Charlotte Caslick

    Charlotte Caslick is a dual international, representing Australia in touch football before being drafted into the successful Australian Rugby 7s team. In 2013 as an 18 year-old she played in her first Rugby 7s World Cup in Moscow and her performances during that tournament established her reputation as the team’s leading play-maker.
    Standout performances during the 2013/14 World Series saw her nominated as World Rugby 7s Player of the Year. Underlining her consistency she won a further nomination for that award in the 2014/15 season and was named in the first ever World Rugby 7s Dream Team.

    Charlotte continues to enhance her reputation as one of the world’s leading players, collecting the World Series title in the 2015/16 season , winning the MVP award in Sao Paulo & Player of the Final in Atlanta along with being named in the World Rugby 7s Dream Team for a second time. The highlight for Charlotte in 2016 was being an integral part of the Australian 7s team to win GOLD at the Rio Olympics. The Australian Women’s 7s team is currently ranked No. 1 in the world.

    ‘I grew up in Brisbane and always had very supportive family and friends. My two older brothers both played rugby and obviously had a big influence on my sporting choices. I attended Brisbane State High, which has a rich rugby heritage, and shortly after graduating, moved to Sydney to join the Australian Rugby 7s program full time. I now live with my partner who is a member of the Australian men’s 7s team and 2 other girls from my squad.’

    Charlotte made her mark on the rugby 7s world in more ways than one. A self-confessed girly-girl, she was quickly identified as the girl with pig-tails and bowed ribbons in her hair. In the world’s fastest growing female participation sport, a generation of rugby 7s starlets have followed her lead.
    ‘In my spare time I love to get dressed up – I love fashion, make up and going out. We live near the beach, so I also spend a fair bit of time down there.’
    ‘It’s amazing that I get to travel the world doing something I love!’

  • Emma Weatherley

    Emma was diagnosed with FSHD at the age of 32 and has become an active member of the FSHD community. Emma is a CPA Qualified Accountant and works for Queensland Rail. A mother of two beautiful daughters, aged 7 and 9, who currently do not exhibit any symptoms of FSHD. Emma is hoping that even if a diagnosis of FSHD is in her children’s future, it will not be the life changing situation that it is right now, because a treatment or cure will be available. Emma describes life with FSHD as a constant juggling act, finding a balance between ability, activity and adaption, while trying to minimise and manage pain and fatigue. After speaking at the 2015 Sydney Chocolate Ball, Emma realised how sharing her story with others can help create awareness and understanding of life with FSHD, and disability in general. She hopes to be able to empower others with FSHD to do the same, and contribute to awareness and fundraising activities, particularly in her home state of Queensland.

  • Tania Spagnolini

    Tania has a background in hospitality and catering and is currently studying accounting. She is also juggling caring for her elderly mother who has FSHD whilst also raising her young daughter and simultaneously grappling with the degenerative effects of her own FSHD. She remains optimistic for finding a cure and has been a volunteer for several years for FSHD Global, focussing primarily on fund raising activities.

State Branches


  • VIC

    Les Jones

    Les is a self-employed consultant who has been working in the financial services industry for the past 28 years. Having a general interest in all good sports; predominantly football, cricket and horse racing, his physical activities are now limited to swimming, which he has done regularly for the past 20 years. Les’s FSHD has dramatically affected his life and the lives of his family.

    Les is married to the gorgeous Claire. They have three beautiful sons, one a sufferer, Kristian, who is no longer with us as a result of FSHD, and three grandchildren, all negative to FSHD. The commencement of the Foundation was one of the happiest and saddest days of my life. Happiest because it represented the shining of a torch at the start of a dark tunnel, and saddest because it hadn’t happened two years earlier, and given our son the hope and strength to continue his eternal struggle with FSHD.

    Les is dedicated to helping the Foundation strive to find a treatment and cure for FSHD. He is one of the driving forces behind the Victorian branch activities, in particular the highly successful Melbourne Chocolate Ball. He is currently the vice president of the Victorian branch, and also an active member of Rotary, Essendon North branch.

  • QLD

    Leona Luke

    Leona is 37 years old and lives at Tallebudgera in QLD. She was diagnosed at age 26 with FSH.

    Leona has fifteen years’ experience in media and communications. She works for a large engineering firm managing communications and engagement for major infrastructure projects. She still dabbles in Journalism having previously established the Gold Coast NBN TV News Bureau and she was a producer, reporter and newsreader for some of the largest radio and TV networks in Australia.

    But her greatest passion is looking after her beautiful 3 year old daughter Rosie who fills her life with so much joy. She also adores her loving husband EJ and the family daschund/mini foxie “Snoopy”.

    Her greatest dream is to find a cure for FSHD and to one day see her mum (who also has FSHD) go shopping with her for hours on end and to buy those fashionable shoes that they love but can never seem to walk in.