Project Description

Natalie Cooney

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”.