A History of Moebius Syndrome Foundation Conferences

Conference Archive

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 2025 Conference page. 

Moebius Syndrome Foundation Conference History


Sixteenth Conference

Minneapolis, Minnesota

Information from the 2023 Conference can be found on the 2023 Conference page.


Fifthteenth Conference

Atlanta, Georgia

Information from the 2022 Conference can be found on the 2022 Conference page.


Fourteenth Conference

Virtual Conference

Selected Conference Presentations:

Fitness for Allpresented by KiOwana E. Phillips 

Adaptive Technology, presented by Alex Barker 

Moebius Syndrome Research Updatespresented 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 Syndromeby Austin Halls, Jessica Maher, Kevin Smant, Ph.D. and Emoni Williams 

Coping Strategies to get through difficult timespresented 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)

Moebius Syndrome Frame Film

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 Sessionpresented by Lisa Smant

Just for Teens With Moebius Chat Session, moderated by Austin Halls (private session)

Well-Being of Parents Within the Moebius Communitypresented by Will Harrison 

Talent Show, with performances by children, teens, and adults with Moebius syndrome



Ft. Worth, Texas

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



Portland, Oregon

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



Thirteenth Conference

St. Petersburg, Florida

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 


2018 MSF Conference Agenda


Twelfth Conference

Long Beach, California


Eleventh Conference

Bethesda, Maryland


Tenth Conference

Philadelphia, PA

Selected Conference Presentations:

Susannah Fox: “What People Living With Rare Diseases Can Teach Us”

Facial Paralysis, Not Personality Paralysis

Health Care Hackers

Dr. Francis Collins, director of the National Institutes of Health, presenting and singing a song at the Opening Session Part 1, Part 2

2012 Conference Attendees


Ninth Conference

Broomfield, Colorado


Eighth Conference

Parsippany, New Jersey


Seventh Conference

San Francisco, California


Sixth Conference

Arlington, Texas


Fifth Conference

St. Charles, Illinois


Fourth Conference

Sturbridge, Massachusetts


Third Conference

Toronto, Canada


Second Conference

Tarrytown, New York


First Conference

Los Angeles, California

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.