Suzanne Perkins is the Support Group Facilitator for the Michigan Regional Support Group. She is a cognitive neuroscientist at the University of Michigan and started the Michigan group two years after her daughter’s diagnosis with DM1. After her daughter was diagnosed at 16, she decided to use her science background to study anything she can about the disease. She found the Myotonic website and came with her two kids to their first conference in 2017. She has been involved in advocacy through Rare Disease Day at the Michigan state capital and through working with her senators to continue the funding of DM as a priority area for the Defense Department Peer-Reviewed Medical Research Program. She has also served as a peer reviewer on behalf of Myotonic.
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