Susan was diagnosed with CMT1A when she was 18 months old and can trace the genetic disease back five generations in her mother’s family. After the birth of her first child, Susan started a local CMT support group to get more information and resources for CMT. Since 2007, Susan has been deeply engaged with the patient and research communities, building connections to fund efficient and effective research leading to the development of therapeutics for CMT.
Susan brings her strategic planning, operational, communications, fundraising and non-profit management experience to the CMTRF. Susan has built a robust network of experts in drug delivery and patient advocacy and continues to be sought by peers in patient-led drug discovery and as an expert in CMT.