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    • Moebius Syndrome Foundation Scientific Research Symposium »
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Moebius Syndrome Foundation
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CONTACT US

844-MOEBIUS  

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Moebius Syndrome Foundation

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Denver, Colorado  80202

info@moebiussyndrome.org

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Past Conferences

2022 Moebius Syndrome Foundation Conference

July 14-17, 2022 • Atlanta Airport Marriott — Atlanta, Georgia

Conference Slideshow

Conference Photos 

View photos taken by Rick Guidotti with Positive Exposure

password: amazing

*Photos are free to download, or prints are available for purchase.

 

There was a fun photo booth at the 2022 conference! Attendees can now download their photobooth pictures for free, or purchase a print here.

View the Moebius Syndrome Foundation’s Flickr account to see conference photos submitted by attendees.

 

View the Conference Program

 

Select presentations are now available to view:

  • Scientific Advisory Board Q&A Panel, presented by Moebius Syndrome Foundation Scientific Advisory Board Members Watch Here
  • Genetic Research into Moebius Syndrome, presented by Elizabeth Engle, M.D., Ethilyn Jabs, M.D., Irini Manoli, M.D., Bryn Webb, M.D. Watch Here
  • Back to School IEP/504 Tips and Resources, presented by Destiny Bachman and Leah Richter Maldonado Watch Here
  • We are Limitless, keynote presentation presented by David Garcia, Ph.D. Watch Here
  • What I Wish My Parents Had Known: Young Adults with Moebius Talk to Parents of Children with Moebius, presented by Jessica Maher, Austin Halls, and Alli Johnson  Watch Here
  • Where to Go and What to Do When You Have Mental Health Concerns, presented by Kathleen Bogart, Ph.D. View Here
  • Standing Up for Yourself: Confidence in Teens & Young Adults, presented by Tara Lewis, Ph.D. View Here
  • Finding Your Passion and Purpose: Key Strategies to Rocking Your Life & Career, presented by Zoe Cross View Here
  • Dental Concerns for People with Moebius, presented by Greg Osborne, D.D.S. View Here
  • Caitlyn’s Oral Hygiene Care Video, presented by Greg Osborne, D.D.S. View Here
  • Surviving the First Year, presented by Katherine Lockwood View Here
  • Disability Won’t Stop Your Ability to Perform, presented by Madhuri Gunti View Here
  • Overcoming Stress and Achieving Relaxation Through Music and Meditation, presented by Jon Fisher View Here
  • Introduction to Sleep Disorders and Treatments, presented by Greg Osborne, D.D.S. View Here
  • Where You Are: How to Identify Your Major and Career Options, presented by Tara Lewis, Ph.D. View Here
  • Psychological Wellbeing of Patients, presented by Kathleen Bogart, Ph.D. View Here
  • Caregiver Burnout and Distress, presented by Rhonda Robert, Ph.D., and Diana Guzman, LPC  View Here
  • Coping Skills for Everyday Life for Teens and Adults, presented by Rhonda Robert, Ph.D.  View Here
  • Speech and Feeding Issues, presented by Renee Roy-Hill, MS, CCP-SLP  View Here
  • Neuromuscular Retraining for Facial Paralysis, presented by Jackie Diels, OT  View Here

 

___________________________________________________

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

___________________________________

2019 Mini-Conferences

In 2019, the Moebius Syndrome Foundation hosted two Mini-Conferences in Portland, OR and Ft. Worth, Texas. View here.

_____________________________________________________

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

      • Rick Guidotti Positive Exposure Photo Gallery » (pw: California)
      • Photo Gallery on Flickr »
      • Conference Slideshow »

 


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.

      • Rick Guidotti Positive Exposure Photo Gallery » (pw: bethesda)
      • Photo Gallery 1 on Flickr »

2014 Moebius Syndrome 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

      • Rick Guidotti Positive Exposure Photo Gallery » (password: philly)
      • Flickr Photo Gallery »

Moebius Syndrome Conference 2012 Gallery 1

 

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

View Conference Slideshow »

 

2010 Moebius Syndrome Foundation Conference Slideshow from Moebius Syndrome Foundation (Vimeo)

 

2010 Moebius Syndrome Foundation Conference

 

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

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