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FSHD Stories
Each person living with FSHD has
a unique and powerful story to tell

Living with FSHD has profound impacts on every part of peoples’ lives, including work, social interactions and family relationships. Community members have shared their moving perspectives of living with FSHD with our team and have told us what it would mean to them to have a potentially transformative therapeutic for their disease. These insights are guiding our efforts to develop therapies that deliver meaningful functional improvement for people living with FSHD.

Laura A. and Chelsea M. photo

Meet Laura and Chelsea

Joint perspective of a mother and daughter’s journey with FSHD

Howard Chabnew photo

Meet Howard

Living with loss, making adjustments: One man’s journey with FSHD

Rachel S. photo

Meet Rachel

“If there was a treatment for FSHD, it would be life-changing for me.”

Ian R. photo

Meet Ian

“So many therapies in development right now. I’m very, very excited.”

Sam M. photo

Meet Sam

“I would love to see some type of therapy that would regrow muscle tissue.”

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