Emily Jones

Rochester, New York, USA

Emily Jones is the Support Group Facilitator for Rochester, New York. Emily retired in 2006 as the Director of New Materials Research, Eastman Kodak Co. She has a son, Jason, and grandson, Logan, who are both affected by the disease. In order to learn more about the disease, Emily formed and has co-lead the Finger Lakes Myotonic Dystrophy Support Group in Rochester, NY since returning from her first MDF Conference in 2015. She spent three years working through the Greece, NY educational system to establish an IEP for her grandson prior to his entering 6th grade. Emily was a panelist on the Women's Caregiver's Panel at the 2017 MDF Annual Conference. With her son, Jason Pleau, Emily has lobbied on Capitol Hill twice for the inclusion of myotonic dystrophy in the DOD research program. In 2019, Emily became a Consumer Reviewer for the DOD Peer Reviewed Medical Research Program on Musculoskelatal Diseases from the perspective of patients with myotonic dystrophy. She spent mornings from March through June, 2020 tutoring her grandson Algebra and provided a deep dive into Romeo and Juliet. Amazingly, they both passed the 9th grade!