Founder & CEO
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 toward drug delivery. Susan is driven to deliver treatments to all people living with CMT.
Susan brings her strategic planning, operational, communications, fundraising and non-profit management experience to CMT Research Foundation. As a member of the BIO Patient Advocacy Committee, Susan built a robust network of experts in drug delivery and patient advocacy and continues to be sought after by peers in patient-led drug discovery and as an expert in CMT. She shares her knowledge of CMT at Georgia Tech, Emory University, Hanger, Inc., The American Orthotic and Prosthetic Association, and BIO. She is a former board member of the Junior League of Atlanta. Susan holds a Bachelor of Arts degree from Clemson University.
Founder and Chairman of the Board of Directors (Volunteer)
Pat is an entrepreneur specializing in finding gaps then building businesses to fill them. Pat has CMT type 2 and has been volunteering on behalf of families living with CMT for years. Through this work, he has come to understand the gaps in delivering treatments for CMT and wants to make therapies available for all types of CMT. Since 2008, Pat was instrumental in developing the CMTA’s STAR Research platform, dedicated to treating CMT through drug development and has worked with the brightest minds and talent in CMT research.
Pat is currently CEO of Loan EcoSystem Online. Pat served as the CEO of the Charcot Marie Tooth Association for five years and, prior to that, was the Chairman of the CMTA’s Board of Directors for four years. Previous professional experience includes serving as the senior managing director and head of the Structured Finance Group at Vanderbilt Capital Advisors, where he grew assets from $300M to over $20B in four years. He also functioned as the CEO and chairman of the Vanderbilt Financial LLC, a permanent capital vehicle. Prior to that, Pat held senior positions in Institutional bond sales for Wall St firms. Pat holds a degree in industrial engineering from Roosevelt University in Chicago. He also holds series 3, 7, and 63 certifications.
Pat brings decades of professional experience in structured finance coupled with a personal passion to end CMT to CMT Research Foundation’s Board of Directors.
Keith Fargo, PhD
Chief Science Officer
Keith joined the CMT Research Foundation after working for 23 years in the research field, including clinical trials, academia, and nonprofit experience. Most recently, Keith worked for seven years at the Alzheimer’s Association, where he led efforts to grow the largest international research conference and scientific society related to dementia science, along with growing engagement in clinical trials. He also led the team of researchers who annually produced Alzheimer’s Disease Facts and Figures, the definitive source of information related to Alzheimer’s incidence and prevalence, mortality and morbidity, and use and costs of care. Keith also brings expertise in public communication of research, making science accessible to people of all backgrounds.
After earning his PhD in neuroscience at Indiana University, Keith worked in peripheral nerve science at Edward Hines, Jr, VA Hospital in the Rehabilitation Research & Development Service, and at Loyola University Chicago—Stritch School of Medicine in the Department of Molecular Pharmacology and Therapeutics.
Keith joined the CMTRF in order to help catalyze scientific progress in this exciting field, and will bring his experience to bear on our critical research mission. He is based in the Chicago area with his wife Susan and 3 children, where they enjoy family life, reading, and Formula 1 racing.