Moebius Syndrome Foundation Board of Directors
President: Jacob Licht, Silver Spring, MD
Jacob has been on the Moebius Syndrome Foundation board since 2006 and currently serves as President. In his professional life, Jacob leads Corporate Development for a European vaccine company. Jacob and his wife live in Silver Spring, MD, and have three daughters, one of whom has Moebius syndrome.
Contact Jacob at: firstname.lastname@example.org
Vice President: Steven Maldonado, Maumee, OH
Steven holds a Bachelor’s Degree in Business Administration from the University of Houston and an MBA from Texas A&M University. Historically, he has worked in Academic Research Administration as a Contracts Administrator/Fund Manager. Steven has been a guest speaker in the Baylor College of Medicine, Compassion and the Art of Medicine Seminar Series, where he shared his life experiences as an adult with Moebius syndrome. Overall, Steven has a major life goal of spreading awareness of Moebius syndrome, and using his experience to guide others through the challenges and triumphs of the condition. Drawing on his life-long experience living with Moebius Syndrome, Steven offers a perspective and unique advice in the hopes of helping viewers as they navigate their own journey.
Contact Steven at: email@example.com
Treasurer: Vicki McCarrell, Pilot Grove, MO
Vicki Mc Carrell is the former President and Co-Founder of the Moebius Syndrome Foundation, which began with small family get-togethers in her living room in the early 1990s. As the parent of a son with Moebius syndrome, she has dedicated the last 25 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 former 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
Secretary: Rebecca L. Maher, Wesley Chapel, FL
Ms. Maher has 22 years of 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.
Contact Rebecca at: email@example.com
Destiny Bachman, Mercer Island, WA
Destiny holds a bachelor’s degree from Utah State University and a Master’s Degree in Political Science from George Mason University. She was worked as a legislative assistant and membership coordinator for lobbying organizations in Washington, DC, and most recently has taken a course on IEP and 504 plans. She is the mother of three children, including a son with Mobius Syndrome.
Contact Destiny at: firstname.lastname@example.org
Kelsey Ferrill, Calgary, Alberta
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. Kelsey expanded her duties with the Moebius Syndrome Foundation in 2021 when she began assisting with their marketing and communications efforts.
Contact Kelsey at: email@example.com
Jon Fisher, Aurora, CO
Jon holds a Bachelor of Music Education (K-12) degree from the University of Northern Colorado and currently works as an administrative assistant for a government contractor employed by the United States Air Force. He is passionate about music and plays fifteen musical instruments. Since 2012, Jon loves being an adult Ambassador for the Moebius Syndrome community and strives to connect with people of all ages. Enthusiasm, honesty, and kindness are three key attributes Jon is always looking for ways to help spread awareness and be an advocate for the community. In his free time, he likes to sing, play piano, watch movies, read, go bowling, have a nice meal with friends, and play video games.
Contact Jon at: firstname.lastname@example.org
Kathryn Kraus, MD, Darlington, PA
The parent of an adult daughter with Moebius, Dr. Kraus has a long-standing interest in all aspects of life with Moebius syndrome. In addition, as a physician, she is committed to advancing research into the therapeutics and mechanisms of the Moebius spectrum.
After obtaining a college degree in Biophysics from PennState, Kathryn attended the University of Pittsburgh School of Medicine, with additional certifications in Internal Medicine, Allergy, and Immunology. Now retired after 30 years in private practice, she is an avid gardener and loves to explore nature with her camera in hand. She lives in western Pennsylvania with her husband, daughter, and their Golden Retriever, Misty.
Contact Kathryn at: email@example.com
KiOwana Phillips, El Paso, TX
KiOwana Phillips and her family have been a part of the Moebius Syndrome community since 2005. She is married with two boys, one of whom has Moebius syndrome. She is an active duty Soldier who has also served as a Moebius Syndrome Regional Coordinator hosting events throughout the United States. KiOwana holds a Bachelor’s Degree in Criminal Justice and a Master’s Degree in Human Resources Management. She has experience in Human Resources Management, Strategic Operations and Planning, Instructing, Coaching, Mentoring, Leadership, and Customer Service.
KiOwana is very excited to be a part of the team and looks forward to serving the Moebius syndrome community.
Contact KiOwana at: firstname.lastname@example.org
Bryn Webb, MD, Madison, WI
Dr. Webb is Board Certified in Clinical Genetics and Pediatrics and is Associate Professor in the Department of Pediatrics, Division of Genetics and Metabolism at the University of Wisconsin-Madison. She has presented at numerous Moebius Syndrome Foundation Scientific Symposiums, has worked with many individuals who have Moebius syndrome, and is the Research Committee Chair at the Moebius Syndrome Foundation.
Contact Bryn at: email@example.com
Monica Woodall, Castle Rock, CO
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: firstname.lastname@example.org
Nicole Zeitler, Hyattsville, MD
Ms. Zeitler is a Trial Attorney in the Disability Rights Section of the Civil Rights Division at the US Department of Justice where she works exclusively on the Americans With Disabilities Act. She previously practiced campaign finance law at the Federal Election Commission. Ms. Zeitler holds a JD and BA in International Studies from the University of Washington in Seattle. She is the mother of a young son with Moebius syndrome.
Contact Nicole at: email@example.com
Moebius Syndrome Foundation Board Support
Executive Director: Jenny Whitman, Castle Rock, CO
Hired as a contractor in January of 2018, Jenny Whitman served in the role of Events and Programs Manager until August 1, 2o21 when she moved into the position of Executive Director. Her job is to help the Moebius Syndrome Foundation fulfill its vision and mission in providing support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome. Jenny will be working closely with the Board of Directors, volunteers, future staff, and key stakeholders to ensure smooth internal operations, that worthy goals are being implemented and met, and that the members of the Moebius community’s concerns and feedback are being heard and addressed. She is dedicated to helping the Foundation continue to grow and looks forward to this exciting work.
On a personal note, Jenny lives in Castle Rock, Colorado with her husband and two dogs. She loves to travel and looks forward to meeting many new people at future Moebius Syndrome Foundation conferences and events.
Contact Jenny at: Jenny@moebiussyndrome.org or 1+(844) 663-2487 x.703
Events and Programs Manager: Loralynne Evans, Westminister, CO
Loralynne Evans joined the Moebius Syndrome Foundation in October 2021 as the Events and Programs Manager. Her primary role is to plan and manage the annual Moebius Syndrome Foundation conference and to coordinate with the Executive Director to plan monthly education or social virtual events for the Moebius Syndrome community. Loralynne has more than 15 years of experience with marketing and event planning. She is excited to bring this experience to the Moebius Syndrome Foundation and to connect with the community to plan an incredible conference.
Loralynne lives in Westminster, Colorado with her husband, three kids, and a dog. She loves hiking, gardening, traveling, and reading historical fiction.
Contact Loralynne at: Loralynne@moebiussyndrome.org or +1(844) 2487 x. 704