The Moebius Syndrome Foundation has so many talented and wonderful speakers participating in this year’s events! We are grateful for those donating their time to the Moebius community.

“Just For” Session Moderators

Just for Women with Moebius, Dr. Kathleen Bogart, PhD, member of the Moebius Syndrome Foundation Scientific Advisory Board. Kathleen also helps moderate the ‘Just for Adults with Moebius’ sessions held every other month.

Just for Men with Moebius, Steven Maldonado, MB, member of the Moebius Syndrome Foundation Board, and Jon Fisher, member of the Moebius community. Steven and Jon also help moderate the ‘Just for Adults with Moebius’ sessions held every other month.

Just for Teens with Moebius, Austin Halls, member of the Moebius community

Just for Parents of Children with Moebius Syndrome, Rebecca Maher, member of the Moebius Syndrome Foundation Board

Just for Parents of Medically Complex Children, Nicole Kovite Zeitler, member of the Moebius Syndrome Foundation Board 

Just for Grandparents of Children with Moebius Syndrome, Janice Critchlow, grandmother to a child with Moebius

New Parent Resources

by Vicki McCarrell

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 1990’s.  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.

Speech and Feeding for Younger and Older Children with Moebius Syndrome

by Renee Roy Hill, MS, CCP-SLP

Renee Roy Hill, MS, CCP-SLP Renee Roy Hill has provided therapeutic assessments and program planning for adults and children with oral placement, feeding and motor speech deficits for over 17 years. She is the owner of Crossroads Therapy Clinic in New Braunfels, TX and a member of the TalkTools® speakers bureau. Renee has been an invited speaker for ASHA state conventions and has received specialized training in speech/oral-motor/feeding therapy, Apraxia, sensory processing disorders, Hanen Courses, NDT training, TAMO therapy and PROMPT. She is the creator of the TalkTools® Schedule Board Kit, co-author of Ice Sticks, and author of the TalkTools® Apraxia Program.

Management of Respiratory Symptoms

by Hollis Chaney, MD

Hollis (Holly) Chaney, MD is an Assistant Professor in Pediatrics at The George Washington University School of Medicine and Health Sciences and the Vice Chair of the Division of Pulmonary Medicine at Children’s National Hospital. She is board certified in pediatric pulmonology. Dr. Chaney has been practicing in Children’s Division of Pulmonary Medicine for over 25 years. She is particularly interested in Cystic Fibrosis, Moebius syndrome, and rare diseases. 

In this session, Dr. Chaney will be addressing some of the most common respiratory symptoms found in individuals with Moebius syndrome, and answer as many related questions as possible.

Confidence in Adults and Teens

by Tara Lewis and Steven Maldonado

Tara N. Lewis, Ed.D. is a Program Career Coach at a local community college. She has worked in higher education for 20 years in a variety of roles including academic advising, program development, teaching, career coaching, and academic administration.  Throughout her life she has worked to connect others, creating collaborations, and building positive impactful relationships. 

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. Steven also co-hosts a weekly Facebook Live program called “Community Chats”, where various issues concerning facial paralysis are discussed and shared. 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. 

Dating and Relationships

by Zoe Cross

Zoë Anthea Cross lives as a British expat in Germany and is a fully trained Life and Business Coach. Born in Germany with Moebius Syndrome, her father was initially told to “put her in an institution and have more children”. Fortunately, he ignored this advice! Zoë has over 20 years experience in international industry and has worked in the UK, Japan and Germany. Thanks to her professional coaching qualifications and her experience in overcoming challenges such as bullying, discrimination and finding a life partner, she is now increasingly devoting her time to supporting, coaching and mentoring people with a visible difference. She has recently had two articles published on Face Equality International on the issue of dating with a difference, and is now an honorary member of the board in the German Moebius Syndrome Association. You can contact her at info@zoe-cross.com, or simply via LinkedIn, Facebook or Instagram.

Preparing for Success in Employment: Tips for Families and Job Seekers

by Sean Roy

Sean Roy is the Chief Innovation and Training Officer for TransCen Inc.  In this position he works to provide training and technical assistance to states, employment professionals and schools, leading to improved success for individuals with disabilities who are transitioning from school into the workforce and life in the community.  Roy is an experienced curriculum developer, writer, trainer and presenter, often being asked to speak to professionals and families about issues of employment, accessing postsecondary education, and promoting family involvement in employment and transition planning. Mr. Roy draws from previous experience as Co-Director of PACER’s National Parent Center on Transition and Employment, as well as being a sibling of an adult with autism. 

Employment Success Roundtable: Tips from Self-Advocates with Moebius Syndrome

by Sean Roy,  Jon Fisher, Leah Richter, Jessica Maher, and Kyle Card

Sean Roy is the Chief Innovation and Training Officer for TransCen Inc.  In this position he works to provide training and technical assistance to states, employment professionals and schools, leading to improved success for individuals with disabilities who are transitioning from school into the workforce and life in the community.  Roy is an experienced curriculum developer, writer, trainer and presenter, often being asked to speak to professionals and families about issues of employment, accessing postsecondary education, and promoting family involvement in employment and transition planning. Mr. Roy draws from previous experience as Co-Director of PACER’s National Parent Center on Transition and Employment, as well as being a sibling of an adult with autism.

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 proud of and he 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.

Jessica Maher is a 19 year old college student at Pasco Hernando State College in Florida. She is currently studying to be an elementary school teacher and is on her second year of her Associates degree. Jessica has been involved with the Moebius Syndrome Foundation since 2002, and has advocated on behalf of people with Moebius Syndrome for many years. In her free time, she likes to read novels, write poetry and short stories, as well as exercise. Jessica has practiced karate since age 6, competed in several tournaments, and earned her black belt in December 2018. She is looking forward to participating in this year’s virtual conference.

Kyle earned his Ph.D. in Microbiology and Molecular Genetics; and Ecology, Evolutionary Biology, and Behavior at Michigan State University in the laboratory of Dr. Richard Lenski. He is now a HHMI Hanna H. Gray Postdoctoral Fellow at the Cleveland Clinic Lerner Research Institute. He studies how genetic, demographic, and ecological factors influence bacterial and cancer populations’ potential to evolve resistance, with the goal of using this knowledge to design better treatment strategies.

Advocacy and mentorship are as equally important to Kyle as his research. For example, he was a Diversity, Equity, and Inclusion (DEI) Task Force member for the American Society for Microbiology (ASM). In this role, he and the other members examined current ASM practices and policies centered around DEI, and then provided evidence-based recommendations and guidelines to the Board of Directors to further improve the society. Kyle has also advised several outstanding undergraduate students who have gone onto either graduate or medical school.

In his free time, Kyle enjoys reading science fiction, cooking, exploring hiking trails, and bar trivia.

Wonder Program for Children, sponsored in-part by the Children’s Craniofacial Association

by Peter Dankelson

Peter Dankelson is proof that anything is possible with passion and a positive attitude.  He is 20 years old and undergone 36 surgeries to correct birth defects from Goldenhar Syndrome.

Peter is a musician and motivational speaker for Pete’s Diary where his humor and music encourage others to embrace what makes them different.  Peter was recognized as one of Music Radar’s Top Online Guitar Personalities of 2020.  He has motivated thousands to follow the Pete’s Diary mission of living your life with confidence, courage, and kindness.

​Peter has been playing guitar for five years, and he loves Blues and Classic Rock.  His biggest influences are Angus Young, Slash, Stevie Ray Vaughan, Jimmy Page, and Gary Moore.  Peter has made guest appearances with professional musicians and been interviewed on several podcasts.  He’s first single “Can’t Stop Staring” is available on all music platforms, and his debut rock album will be released in early 2022.

​Peter is a Rare Storyteller for the charity Harmony 4 Hope and a #ChooseKind Speaker for Children’s Craniofacial Association.

‘Just for Children with Moebius Syndrome Meet & Chat’

by Dr. Rhonda Robert

Dr. Rhonda Robert is Chief of Behavioral Pediatrics and professor of clinical psychology at The Children’s Cancer Hospital, University of Texas MD Anderson Cancer Center and previously Chief of Psychological Services at the University of Texas Medical Branch (UTMB) Shriners Hospital for Children.  Caring for children with health problems and their emotional and social well-being has been her career priority.  Dr. Robert has attended many Moebius Syndrome Foundation conferences and events, and is looking forward to presenting this virtual session that will help children meet one another.

The children will also be meeting a special guest or two during their session with Dr. Robert!

Moebius Syndrome Research Updates

by Dr. Elizabeth Engle, MD, Dr. Ethylin Jabs, MD, Dr. Irini Manoli, MD, and Dr. Bryn Webb, MD

Elizabeth Engle received her MD from The Johns Hopkins School of Medicine with an internship and residency in pediatrics. She served as the neuropathology fellow at Massachusetts General Hospital, followed by a neurology residency in child neurology at Children’s Hospital, Boston.  Trained in genetics research, Dr. Engle is now professor of neurology and ophthalmology at Harvard Medical School and an investigator of the Howard Hughes Medical Institute.  Her lab has made significant finds in congenital cranial nerve disorders.  She has received the E. Mead Johnson Award for Research in Pediatrics, The Sidney Carter Award in Child Neurology, and a Research Award for Vision from the Alcon Institute.

Involved in medical genetics for at least 30 years, Ethylin Wang Jabs is Professor of Pediatrics and Professor of Developmental and Regenerative Biology at Mount Sinai School of Medicine.  She is Vice Chair of the Department of Genetics and Genomic Sciences and is an Adjunct Professor of Pediatrics, Medicine and Surgery at Johns Hopkins University.  Her expertise is in developmental genetics of congenital anomalies and she has conducted research on the molecular basis of human malformation disorders including Moebius syndrome.  She has an active practice and sees patients with dysmorphology.  Dr. Jabs has been on the Scientific Advisory Board for the Moebius Syndrome Foundation since 2002.

Dr. Manoli is a physician scientist who focuses on natural history and translational studies on rare genetic syndromes. She works as a staff clinician at the Genetics and Molecular Biology Branch of the National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH), in Bethesda, MD.  Her primary interest is in clinical genomics and translational research with the aim to understand the pathogenetic mechanisms and develop new therapies for genetic and metabolic disorders including efforts to identify the genetic cause of rare syndromes as the NHGRI study on Moebius syndrome and other congenital facial weakness disorders.

Dr. Bryn Webb is an Instructor in the Departments of Genetics and Genomic Sciences and Pediatrics at the Icahn School of Medicine at Mount Sinai. She received her medical degree from the University of Texas Southwestern Medical School in Dallas and Pediatrics and Medical Genetics residency training at Mount Sinai Hospital.  Dr. Webb studies the genetics of craniofacial disorders and congenital anomalies. Her work has included the identification of the HOXB1 gene for hereditary congenital facial paresis, type III. Dr. Webb’s Moebius syndrome research is supported by the Moebius Syndrome Foundation, The Slomo and Cindy Silvian Foundation, and the Icahn Institute for Genomics and Multiscale Biology at Mount Sinai.

Scientific Advisory Board Q&A

Dr. Kathleen Bogart, PhD., Dr. Gregory Borschel, MD., Hollis Chaney, MD,  Jackie Diels, OT, Dr. Elizabeth Engle, MD, Dr. David Hunter, MD, Dr. Ethylin Jabs, MD, Dr. Philip McClure, MD, MD, Dr. Marilyn Miller, MD, Dr. Richard Redett, MD, Renee Roy-Hill, MS – CCC/SLP, Dr. Rhonda Robert, PhD, Dr. Ronald Zuker, MD

You can find out more about the Scientific Advisory Board here.

Eye Basics for People with Moebius Syndrome

Dr. David Hunter, MD

David G. Hunter, MD, PhD is Ophthalmologist-in-Chief and the Richard M. Robb Chair of  Ophthalmology at Boston Children’s Hospital, President of the Children’s Hospital  Ophthalmology Foundation, and Professor and Vice Chair of Ophthalmology at Harvard Medical  School. Dr. Hunter obtained a Bachelor of Science in electrical engineering from Rice University  and an MD and PhD (in Cell Biology) from Baylor College of Medicine. He completed an  ophthalmology residency at Harvard/Mass Eye & Ear and a fellowship in pediatric  ophthalmology at Johns Hopkins/Wilmer Ophthalmological Institute. Dr. Hunter’s clinical and  research interests revolve around the diagnosis and treatment of amblyopia and strabismus. He  is co-author of the books Learning Strabismus Surgery: A Case-Based Approach and Last-Minute  Optics (now in its second edition), and his lecture series on optics and refraction is available free  of charge in podcast form for ophthalmologists-in-training around the world. Named in 2012 by  the Boston Globe as one of Massachusetts’ 12 Top Innovators, Dr. Hunter is also founder and  board member of Rebion, Inc., which is developing a new product related to early detection of  eye disease in children. Dr. Hunter is also a valued member of the Moebius Syndrome Foundation Scientific Advisory Board, and is looking forward to connecting with the Moebius community virtually this year.

Dental Basics for Individuals with Moebius Syndrome

by Greg Osborne, DDS

Gregory Allen Osborne, DDS has been practicing general dentistry in San Antonio since 1981. He is recognized as a Fellow in the Academy of Dentistry International for his efforts to serve the dental and oral health needs and to improve the quality of life of the people throughout the world. He is a long-time member of the American Dental Association, the Texas Dental Association, and the San Antonio District Dental Society. He is a member of the Texas Academy of Dentistry, Academy of Sleep Medicine Dentistry, and Christian Medical and Dental Associations. 

His third daughter, Caitlin, was born in 1993 with Moebius syndrome.

Thank you for joining us, and for all your support!