Managing Director

Natalie Cooney 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”.

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Chief Executive Officer

Danielle has worked in marketing and communications for the past 17 years, specifically in event production. She has produced the Sydney Chocolate Ball for the past 6 years and manages our popular golf days and expanding event calendar.

She is highly experienced in logistics and production to multimedia and design, having produced many national and international events from major award shows, conferences and roadshows, team building activities, sporting events, gala dinners, to press launches, incentive programs, festivals, hospitality programs, charity events, fashion parades and launches, concerts and exhibitions.

She brings her own unique drive, creativity and application to all projects she is involved with.

Executive Office & Operations Manager

Norma has worked in the Charity and Volunteer space for over seven years and prior to that she worked as an Assistant Accountant for a an international medical and rehabilitation wholesale company for five years. Norma’s working life spans over 30 years working in a variety of different roles spanning the graphics industry through to business; this experience gives Norma the versatility and skills to drive the business processes of the Foundation in order to support its objectives.

Norma achieved the Academic Excellence Award for her Bachelor of Business studies Degree in 2012 as a mature aged student while working full time and raising her family. Her drive and commitment is evident in everything she does and working for the FSHD global has been a natural transition.

Norma is motivated and hands on and understands the importance of developing positive relationships with a diverse range of stakeholders. Norma is committed and passionate about creating a quality workplace.

Medical Science Liaison

Dr. Victoria Dokic is currently Head of Science at FSHD Global Research Foundation. Her main role entails managing and overseeing all scientific activities of the Foundation, including actively seeking partnerships opportunities with researchers to find a treatment and cure for FSHD.

Victoria has been involved in research and pharmaceuticals for nearly 15 years’ and holds a PhD in Cardiovascular Medicine. She has also been involved in several entrepreneurial ventures, including winning $100,000 in the University of Queensland Enterprize Business Plan Competition. For several years. Victoria worked in the Medical Affairs division for large multinational companies AstraZeneca and Bayer and helped facilitate research and medical educations activities in the Cardiology and Thrombosis therapeutic areas. Her passion is to improve patient care and outcomes through research and innovation. Victoria regularly attends research conference, pharmaceutical networking events, has a keen interest in start-up companies. She was also a semi-finalist for both the South Australian Young Achiever of the Year and the SA Community Achievement Awards.

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Community Liaison Officer

Tania has a background in hospitality and catering and is currently working for FSHD Global. She is also raising her daughter, Francesca 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.