Ellen Graham is a Brisbane-based Fitness and Pilates Instructor. She is devoted to her career, and works for Goodlife Health Clubs Australia in a variety of roles.

She first became aware of FSHD Global when doing her own research when her brother was undergoing the diagnostic process, and was brought to tears watching clips from others sharing their stories at the Sydney Chocolate Ball. ‘I will never forget watching Claire Anderson speaking and having that sinking feeling in my gut, knowing that we were facing the same disease’.

Ellen, her brother, and mother all have FSHD 1. She believes that being the least affected out of all of her family members can be attributed to her career, and being physically active. “There is no greater motivation to appreciate the things you are able to do in the present moment, than seeing a close one lose those abilities.”

Ellen aspires to be a positive role-model for the FSHD community, but also for young people battling chronic illness, mental or physical, and is looking forward to sharing her joy and passion for health and fitness through community events. ‘I refuse to let this disease stop me from achieving my dreams and goals career-wise; I have the will, and will find a way’.