Executive Director — Dina Scalone
Dina Scalone serves as the Executive Director for the Moebius Syndrome Foundation. In this role, Dina 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.  Dina has more than 20 years of nonprofit experience and is committed to ensuring a sustainable future for The Moebius syndrome Foundation. Dina lives in Tucson, Arizona and spends her free time with her two sons, training Capoeira and traveling.

Contact Dina at: dina@moebiussyndrome.org (844) MOEBIUS (663-2487) ext. 708

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: vicki@moebiussyndrome.org / (844) MOEBIUS (663-2487) ext. 701 or (660) 834-3406
 

Vice President Dr. Kevin Smant
Kevin 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: kevin@moebiussyndrome.org.

Secretary: Monica Woodall
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:monica@moebiussyndrome.org.

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: jacob@moebiussyndrome.org.

Board Members:

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: kathleen@moebiussyndrome.org.

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.

Kelsey Ferrill

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.