Project Description

Emma Weatherley

After being diagnosed with FSHD in her early 30’s, Emma has had to adapt her home and work life significantly to accommodate her changing abilities. Her positivity and optimism for life is contagious and she is a passionate advocate for accessibility and inclusion in her local community and as an Ambassador for FSHD Global Research Foundation. She enjoys helping others within the FSHD community.

Emma shared her story at the 2015 and 2019 Chocolate Balls, not just as an FSHD patient herself, but as a mother trying to navigate the diagnosis process for her youngest daughter Hannah, who initially received her clinical diagnosis of FSHD in 2017, is still without a genetic confirmation of the disease. Emma shares her insights into living with this progressive, untreatable disease and her hopes for a bright future for herself and her daughter Hannah.