Every Moebius Syndrome Foundation Conference offers a wealth of resources and information specific to the condition. Below you will find a historic timeline of our previous conferences.
If you are looking for information about upcoming conferences, please see our 2023 Conference page.
2023
Information from the 2023 Conference can be found on the 2023 Conference page.
2022
Information from the 2022 Conference can be found on the 2022 Conference page.
2020
Selected Conference Presentations:
Fitness for All, presented by KiOwana E. Phillips
Adaptive Technology, presented by Alex Barker
Moebius Syndrome Research Updates, presented by Drs. Engle, Jabs, Manoli, and Webb
Just for Moms of Moebius Children Chat, moderated by Sharon Deveney (private session)
Happy Hour and Bingo, moderated by Kelsey Ferrill and Jenny Whitman
Scientific Advisory Board Q&A Session, moderated by Vicki McCarrell
Just for Dads of Moebius Children Chat, moderated by Will Harrison (private session)
Just for Parents of Medically Complex Children Chat, moderated by Nicole Zeitler, Moebius Syndrome Foundation Board Member (private session)
Your Personal Image, presented by Susana Romero
A Bright Future: Looking Beyond Moebius Syndrome, by Austin Halls, Jessica Maher, Kevin Smant, Ph.D. and Emoni Williams
Coping Strategies to get through difficult times, presented by Dr. Leah Stock-Landis, PhD
Just for Women With Moebius Chat, moderated by Dr. Kathleen Bogart, Moebius Syndrome Foundation Scientific Advisory Member (private session)
Just for Men With Moebius Chat, moderated by Steven Maldonado, Moebius Syndrome Foundation Board Member (private session)
Just for Canadians Chat Session, moderated by Kelsey Ferrill, Moebius Syndrome Foundation Board Member (private session)
Art Journaling: A Creative Writing Session, presented by Lisa Smant
Just for Teens With Moebius Chat Session, moderated by Austin Halls (private session)
Well-Being of Parents Within the Moebius Community, presented by Will Harrison
Talent Show, with performances by children, teens, and adults with Moebius syndrome
2019
The Moebius Syndrome Foundation, the nation’s largest organization dedicated to providing information and support to individuals with Moebius syndrome, hosted its second Mini-Conference in Ft. Worth, Texas, on November 8-9, 2019. This was an exciting new venture to bring a taste of the national conference to families and individuals across the nation. These small meetings are more affordable and accessible. Mini-Conferences focus on support for families and individuals with Moebius syndrome, education, social activities, and some research opportunities.
Selected Conference Presentations:
Owning Your Path To Resiliency, presented by Michelle Mitchell, Ph.D., MSW, LCSW, ACC, CPXP, HeartStrong Coaching and Consulting Group
Traveling Made Easy, presented by Debra Kerper
On April 5, 2019, the Moebius Syndrome Foundation hosted its first Mini-Conference in Portland, Oregon.
Held at the Red Lion Hotel, the event was attended by over 40 community members, and included a full day of educational and social sessions, a dance, and picnic at a park.
Selected Conference Presentations:
The Psychology of Living Well with Moebius presented by Kathleen Bogart Ph.D.
Navigating Employment with Moebius Syndrome: Legal Protections in State and Federal Law presented by Brandy Pirtle Guiney, Attorney, and Brittni Jones
How to Host a Successful Awareness Event presented by Kelsey Ferrill
Children’s Chat and Art Therapy, presented by Kaeleen Kirkpatrick, Psychologist
Leadership and Mentoring, presented by Steven Maldonado, MSF Board Member
Pediatric Feeding, presented by Allyson Goodwyn-Craine, M.S., CCC-SLP, CLC, BCS-S
2018
Selected Conference Presentations:
Overview of Collaborative Moebius Syndrome Research Initiatives: Mt. Sinai, Boston Children’s, NIH
Orthopaedic Conditions in Moebius Syndrome: Brian Deignan M.D., BayCare Pediatric Orthopedics
Healthy Neurology: How Chiropractic Care Can Play a Role: Dr. Enrico Dolcecore, Neurological Chiropractor, Full Life Chiropractic
Social Skills Workgroup: What to say, who to tell, and who can help: Melissa A. Faith, Ph.D., ABPP
High Functioning Autism Spectrum Disorder in Children and Adolescents: Lauren Gardner, PhD, Johns Hopkins All Children’s Hospital
Disability Benefits Explained: SSI, SSDI, DAC, Medicare, Medicaid and ABLE Accounts: David Lillesand, Esq. Lillesand, Wolasky, Waks & Hitchcock, P.L.
Special Needs Trusts and Estate Planning – Tips to Preserve Public Benefits: David Lillesand, Esq. Lillesand, Wolasky, Waks & Hitchcock, P.L.
Your Guide to an IEP That Works: Misti Pollaro and Tosha Little, Family Network on Disabilities
Bullying and Chronic Health Conditions: Rhonda Robert, Ph.D., MD Anderson Cancer Center | Children’s Cancer Hospital
Navigating the Job Search: Tips and Tools: Sean Roy, TransCen
Setting the Stage for Employment Success: Sean Roy, TransCen
Wonder Presentation: Dina Zukerburg and Vera Eastman, MyFace
Conference Photo Galleries: Facebook| Flickr
Positive Exposure Photos (password: Amazing) Photos for View or Purchase
2016
2014
Selected Conference Presentations:
Looking Imperfect in a Look-Perfect World: Insights and Challenges: James Partridge
Speech Clarity for Three Years of Age Through Adults: It’s Never Too Late!: Sara Rosenfeld-Johnson MS, CCC-SLP
Alternative Therapies: Essential Oils from A to Z for a Moebius Family: Emily Calhoon
Respiratory Care of Children with Rare Diseases: Sharon McGrath-Morrow MD
Sleep and Moebius Syndrome: Jennifer Accardo, MD
Defining Your Pathway to Employment: Elizabeth Jennings
A Discussion of the Social Psychology of Moebius Syndrome: Kathleen Bogart Ph.D.
Moebius Syndrome & Service Dogs: Natalie Abbott
2012
Selected Conference Presentations:
Susannah Fox: “What People Living With Rare Diseases Can Teach Us”
Facial Paralysis, Not Personality Paralysis
Dr. Francis Collins, director of the National Institutes of Health, presenting and singing a song at the Opening Session Part 1, Part 2
2010
2008
2006
2004
2002
2000
1998
1996
1994
The Moebius Syndrome Foundation was founded in the 1990s by several parents of children with Moebius syndrome. Adults with Moebius syndrome soon joined their efforts, and the organization evolved from a support group to a national nonprofit. The founders included Vicki McCarrell, Lori Thomas, Kathi Campbell and Rich Campbell.
The first national conference took place in Los Angeles in 1994 and the 501(c)(3) status was granted later that year. The Scientific Advisory Board was created in 1998.