Patient Advocacy Program Manager
Amy Curran is a patient with GNE myopathy (GNEM) from the suburbs of Philadelphia, Pennsylvania. She is the youngest of four siblings, all of whom have GNEM. Diagnosis for Amy and her siblings took over 20 years and occurred in 2005, when Amy’s symptom was a “funny walk” and her oldest sibling was in an electric wheelchair. The firsthand experience of observing older siblings degenerating before her eyes empowered Amy to become an advocate for GNEM. She has an undergraduate degree in Biology, 2004, and a Master’s degree in Education, 2006. She taught middle school Special Education for 9 years and has experience navigating the work force as an adult with a physical disability. After recovering from a Traumatic Brain Injury and returning to work, Amy retired from education, in 2015, to pursue a new calling. She now dedicates her time to raising awareness and advocacy for disabilities. She is working and volunteering for NDF and is also on the National Community Advisory Committee of the Muscular Dystrophy Association (MDA). Amy’s goal is to bring worldwide awareness to GNEM and to continue to fight for the rights of all persons with disabilities and their families.