Past Conferences
2020 Virtual Moebius Syndrome Foundation Conference
14th Moebius Syndrome Foundation Conference
- Fitness for All, presented by KiOwana E. Phillips Watch Here
- Adaptive Technology, presented by Alex Barker Watch Here
- Moebius Syndrome Research updates, presented by Drs. Engle, Jabs, Manoli, and Webb Watch Here
- Just for Moms of Moebius Children Chat, moderated by Sharon Deveney (private session)
- Happy Hour / Bingo, moderated by Kelsey Ferrill and Jenny Whitman Watch Here
- Scientific Advisory Board Q&A session, moderated by Vicki McCarrell Watch Here
- 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 Watch Here
- A Bright Future: Looking Beyond Moebius Syndrome, by Austin Halls, Jessica Maher, Kevin Smant, PhD, Emoni Williams Watch Here
- Coping Strategies to get through difficult times, presented by Dr. Leah Stock-Landis, PhD Watch Here
- Just for Women with Moebius chat, moderated by Dr. Kathleen Bogart, Moebius Syndrome Foundation Scientific Advisory Member (private session)
- Moebius Syndrome Frame Film Watch Here
- 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 Watch Here
- 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 Watch Here
- Talent Show with performances by children, teens, and adults with Moebius syndrome Watch Here
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2019 Mini-Conferences
In 2019, the Moebius Syndrome Foundation hosted two Mini-Conferences in Portland, OR and Ft. Worth, Texas. View here.
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13th Moebius Syndrome Foundation Conference
July 20-22, 2018 • Vinoy St Petersburg — St Petersburg, Florida
Conference Slideshow
13th Moebius Syndrome Foundation Conference Closing Slideshow from Moebius Syndrome Foundation on Vimeo.
Conference Photo Galleries: Facebook | Flickr
Positive Exposure Photos (password: Amazing) Photos for View or Purchase
Conference Agenda
Selected 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 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 Final_MoebiusConference: Dina Zukerburg and Vera Eastman, MyFace
12th Moebius Syndrome Foundation Conference
July 15-17, 2016 • Long Beach Hilton — Long Beach, California
11th Moebius Syndrome Foundation Conference
July 18 –20, 2014 • Bethesda North Marriott Hotel & Conference Center
North Bethesda, Maryland
2014 Moebius Syndrome Foundation Conference Slideshow from Moebius Syndrome Foundation (Vimeo).
375 people from throughout the world attended the 11th Moebius Syndrome Foundation Conference.
Selected Conference Presentations
Looking Imperfect in a Look-Perfect World: Insights and Challenges »
James Partridge
Speech Clarity for 3 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
Moebius Syndrome and Sleep »
Jennifer Accardo, MD
Defining Your Pathway to Employment »
Elizabeth Jennings
A Discussion of the Social Psychology of Moebius Syndrome »
Kathleen Bogart PhD
Service Dogs in Supporting Independence for People with Disabilities »
Natalie Abbott
10th Moebius Syndrome Foundation Conference
July 13-15, 2012 • Sheraton Philadelphia Downtown, Philadelphia, PA
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- Rick Guidotti Positive Exposure Photo Gallery » (password: philly)
- Flickr Photo Gallery »
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View Conference Videos
Dr. Francis Collins, Director of the National Institutes of Health, presenting and singing a song at the Opening Session.
2012 pt 6 Moebius Syndrome Foundation Conference from Moebius Syndrome Foundation (Vimeo).
View Conference Presentations and Blog Posts
Susannah Fox: “What People Living With Rare Diseases Can Teach Us”
http://e-patients.net/archives/2012/07/facial-paralysis-not-personality-paralysis.html »
http://e-patients.net/archives/2012/07/health-care-hackers.html »
9th Moebius Syndrome Foundation Conference
July 30 – August 1, 2010 • Broomfield, Colorado
2010 Moebius Syndrome Foundation Conference Slideshow from Moebius Syndrome Foundation (Vimeo)
Older Conferences
8th – 2008 Parsippany, New Jersey
7th – 2006 San Francisco, California
6th – 2004 Arlington, Texas
5th – 2002 St. Charles, Ilinois
4th – 2000 Sturbridge, Massachusetts
3rd – 1998 Toronto, Canada
2nd –1996 Tarrytown, New York
1st – 1994 Los Angeles, California
CONTACT US
844-MOEBIUS
(844-663-2487)
Moebius Syndrome Foundation
P.O. Box 147
Pilot Grove, MO 65276
info@moebiussyndrome.org