Core Team

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”.

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.

Tania has a background in hospitality and catering and is currently working for FSHD Global. She is also juggling 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 fundraising activities.