The Moebius Syndrome Foundation regretfully announces that its 14th national conference and scientific research symposium scheduled to be held in Minneapolis, Minnesota on July 22-25, 2021, is cancelled. Please read here for more information.
Category Archives: General
Living with Facial Weakness? The NIH wants to hear from you. The research team aims to learn people’s views on how facial weakness affects or does not affect their everyday lives. The data will be used to understand the experiences of adults and adolescents from their own perspective. The survey takes approximately 20 minutes to complete; please take your time and answer each question honestly. Some items are quite similar, but they assess distinct preferences and are important because they give ...READ MORE »
The Moebius Syndrome Foundation has awarded three young people with the Post-Secondary Educational Scholarships. We are pleased to announce that those awarded with $2,000 scholarships toward their college tuition are Brianna Kelley, Mike Gonzalez and Dominque Piotrowski. Congratulations!! Brianna Kelley of Lawrenceville, GA, will attend the University of Iowa where she will pursue her doctorate in Communication Sciences and Disorders. Brianna is a member of Phi Kappa Phi, Golden Key International Honor Society, Sigma Alpha Lambda, and Phi Theta Kappa. She ...READ MORE »
Join the Moebius Syndrome Foundation for its inaugural Webinar presentation. We’re Talkin’ Moebius! For the first presentation, we are honored to host Dr. Rhonda Robert, P.h.D., Chief of Behavioral Pediatrics and professor of clinical psychology at The Children’s Cancer Hospital, University of Texas MD Anderson Cancer Center. She will be discussing Psychological Well-Being and Moebius Syndrome. You must register in advance for the Moebius Syndrome Foundation Webinar Presentation on Thursday, March 2, 2017, 8 pm EST. There are limited spots! Register ...READ MORE »
The Moebius Syndrome Foundation is excited to announce the premiere of the FRAME video, produced by Rick Guidotti and his non-profit organization, Positive Exposure! FRAME is a web-based educational library and resource created by Positive Exposure that changes how medical information is presented to health care professionals in training, clinicians, families and communities. Additionally, FRAME can be utilized by families, therapists, educators, communities as well as a tool for transition medicine as an increasing number of young adults living with genetic conditions now ...READ MORE »
The Moebius Syndrome Foundation is now accepting applications for Regional Coordinators (RCs). A Regional Coordinator is a volunteer, non-paid position. We are excited to expand the structure of the organization and the possibilities for future events. We will be creating MSF Chapters around the country, which will provide all with an opportunity to meet in person on a more frequent basis than the conference. This fall, the Moebius Syndrome Foundation will be hosting the Mighty Moebius Walk & 5K!! With all of these great ...READ MORE »
We celebrated Rare Disease Day on February 29th. Watch the first five minutes of #RareDiseaseDay and see National Institutes of Health (NIH) Director Francis Collins spotlight Moebius syndrome! The day was established to raise awareness with the public about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients’ lives.
*Announcement* The Moebius Syndrome Foundation is expanding its Young Adult Advisory Board to include a more diverse age range. We are now seeking applications from young adults with Moebius syndrome aged 16-25 to join. This group will serve an advisory role to the Moebius Syndrome Foundation Board of Directors, keeping them appraised of issues relevant to their age group. For example, the board may suggest ideas for conferences and engage in social media campaigns. The board will meet via videochat approximately ...READ MORE »
The Moebius Syndrome Foundation is so excited to announce that it has received the Global Genes RARE Patient Impact Grant. The grant support will educate the Moebius community about Oral Placement Therapy at the upcoming Moebius Syndrome Foundation Conference. For the first time, Feeding and Speech Clarity consultations will be offered free of charge! Two therapists will provide individual speech & feeding consultations. Each is a 45 minute evaluation which provides an overview of the muscle based activities that ...READ MORE »