Co-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.
Keith Fargo, PhD
Chief Scientific 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.
Erich M. Fasnacht
Chief Operations Officer
Gary is working with the CMT Research Foundation as the social media and community manager to connect with those living with CMT and help tell and elevate our story so that we can raise more funds to invest in research that will lead to treatments during our lifetime.
Proud to work with the CMT Research Foundation because they identify the most promising research, the best researchers and bring them together so that we can make real progress. That’s what we need, and we can’t wait any longer. Our time is now.
Kiesha M Halliburton
Kiesha Halliburton currently serves as the Operations Manager for the CMT Research Foundation. Kiesha began her professional career at Spelman College and took on the role of Bonner Scholars Program Assistant. From there, Kiesha has held positions at companies such as Atlanta Center for Medical Research, Nth Dimensions and Muscular Dystrophy with roles such as Clinic Research Coordinator, Director of Programs and Grant Specialist. Her professional focuses include operations management, grant management, student internships, bookkeeping, research and data analyzing.
In Kiesha’s free time, she is a volunteer with Atlanta Community Food Bank through Junior League of Atlanta, manager/consultant with K. Cooper Consulting and serves as Research Board Member with NurseHer. Kiesha is a mother of two children, Ava and Chandler and a wife to Cedric.
Kiesha holds a Bachelor of Science degree in Biology from Spelman College.
Marketing and Operations Specialist
Vanessa Sanchez currently serves as the Marketing and Operations Specialist for the CMT Research Foundation. Vanessa holds a Bachelor of Arts from Georgia State University and is based in Atlanta. She began her work in nonprofit development at Big Brothers Big Sisters of Metro Atlanta as a Special Events Coordinator. After that, she worked at Our House, Inc as a Development Coordinator. Her focus is development, operations, and marketing in nonprofits. Vanessa is also a U.S. Army Veteran who has proudly served her country since 2015. Vanessa is happy to be at CMTRF and to help further our mission.
Board of Directors
Meet the Board of Directors who govern the activities of The CMT Research Foundation.
Meet the experts who guide us on the path to funding treatments and cures for CMT.
Meet the volunteers who assist in the operations of The CMT Research Foundation.