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

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

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)

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 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

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

 

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 

 

See the 2016 Photo Gallery on Flickr

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

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

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.