Executive Director — Kim Cunningham
Kim Cunningham serves as the Executive Director for the Moebius Syndrome Foundation. In this role, Kim works with the Board of Directors to accomplish the goals and objectives of the Foundation. She is responsible for the administrative functions, works directly with members and partners of the Foundation, leads the organization’s strategic planning efforts and implements efforts to realize the vision of the Foundation.
Kim has more than 18 years nonprofit experience. She is an experienced nonprofit manager and uses her marketing and fundraising expertise to generate greater awareness and understanding of Moebius syndrome.
Kim works in the Boston area and spends her free time with her two young children and husband. They enjoy spending time as a family, bicycling, and visiting local beaches.
Contact Kim at: email@example.com / (844) MOEBIUS (663-2487) ext. 700
Moebius Syndrome Foundation Board of Directors
President: Vicki McCarrell
Vicki McCarrell is the President and Co-Founder of the Moebius Syndrome Foundation, which began with small family get togethers in her living room in the early 1990’s. As the parent of a son with Moebius syndrome, she has dedicated the last 20 years to bringing worldwide awareness of Moebius syndrome, worked with the research community and MSF Scientific Advisory Board to encourage research into the cause of Moebius syndrome and enjoys speaking with and meeting parents of children and individuals with Moebius. She lives in Central Missouri and holds a Master’s Degree in Guidance and Counseling from California State University – Northridge. She also serves on the Board of Directors of the National Organization for Rare Disorders (NORD), is the Deputy Director of the Missouri Division of Developmental Disabilities and interacts with the leaders of Moebius Syndrome Foundations/Associations around the world.
Contact Vicki at: firstname.lastname@example.org / (844) MOEBIUS (663-2487) ext. 701 or (660) 834-3406
Vice President: Matthew Joffe
Matthew S. Joffe wants to educate the world about people with differences. He is currently Director, Education and Outreach and a Wellness Counselor in the Wellness Center at LaGuardia Community College/CUNY. He also the college’s ADA/504 Compliance Officer. His background includes educational therapy, psychotherapy, and alcohol and chemical dependency counseling. He is currently completing certification as a life coach. An actor and published poet, he has appeared in Inside/Out: Voices from the Disability Community and performed and co-wrote two original plays with the Inner Faces Players. Matthew has appeared in several documentaries about Moebius syndrome. Contact Matthew at: email@example.com.
Secretary: Marcia Abbott
Marcia Abbott currently serves as the Secretary for the Moebius Syndrome Foundation Board of Directors. In addition, she serves as the Event Planner for the Moebius Syndrome Conference. She is the parent of an adult with Moebius syndrome. Contact Marcia at: firstname.lastname@example.org / (844) MOEBIUS (663-2487) ext. 702
Treasurer: Jacob Licht
Jacob has been on the Moebius Syndrome Foundation board since 2006 and currently serves as Treasurer. In his professional life Jacob evaluates acquisition and licensing opportunities at a mid-sized biotechnology company in Gaithersburg, MD. Jacob and his wife have three daughters, one of whom has Moebius syndrome. Contact Jacob at: email@example.com.
Dr. Kathleen Bogart is a psychology professor at Oregon State University. She is an adult living with Moebius and has done extensive research on Moebius syndrome and other facial movement disorders. Her research on the psychosocial ramifications of facial paralysis has been funded by the National Institutes of Health. She was a R.A.R.E. Champion of Hope Award Science Nominee in 2012. Learn more about her research. Contact Kathleen at: firstname.lastname@example.org.
Roland Bienvenu, MPA has served on the Board of Directors since 2005. He retired from the human resources field in 2013 and currently resides in Sugar Land, Texas, a Houston suburb. Contact Roland at: email@example.com.
Dr. Kevin Smant has a Ph.D. in American History and currently teaches history at the University of Texas at Arlington, Tarrant County College, and the University of Southern New Hampshire. He lives with his wife and two children in Fort Worth, Texas. Kevin has served on the Moebius Syndrome Foundation Board since 2010. Contact Kevin at: firstname.lastname@example.org.
Monica chaired the conference in 2010 in Colorado, and has played a key role in conference planning since then. She is the parent of three children, one of whom is a teen with Moebius syndrome. Contact Monica at: email@example.com.
Bryn Webb, MD
Dr. Webb is Board Certified in Clinical Genetics and Pediatrics and is Assistant Professor in the Department of Genetics and Genomic Science & Pediatrics at the Ichan School of Medicine at Mt. Sinai Hospital in New York City. She is also the Co-Director of the Cleft & Craniofacial Clinic at Mt. Sinai Hospital, and is an active investigator in genetic research to better understand the etiology of Moebius syndrome and its associated conditions. She has presented at numerous Moebius Syndrome Foundation Scientific Symposiums and has worked with many individuals who have Moebius syndrome.
Paula Keebler Santana
Ms. Santana holds an MBA and Masters of Public Health from the University of California at Berkeley. She is currently a Marketing Director for Medivation, Inc., a large pharmaceutical company recently acquired by Pfizer, and has worked in the field for over 20 years. She is the mother of a young son who has Moebius syndrome.
Rebecca L. Maher
Ms. Maher has 22 years’ experience in sales and marketing for Novartis Pharmaceuticals Corporation and is a Senior Area Business Leader for the Southeast Region. She holds a Bachelor’s Degree from the University of Illinois Urbana-Champaign, has attended Moebius Syndrome Conferences since 2002 and is the mother of a teenaged daughter with Moebius syndrome. Rebecca is on the 2018 conference planning committee.
Ms. Ferrill holds a Bachelor’s Degree in Communication Studies from the University of Calgary and earned a Journalism Diploma with Honors at SAIT Polytechnic in Calgary. She was a News Intern at Global News in Calgary and has appeared many times in various magazines, newspapers and television shows sharing her story of living with Moebius syndrome.