Moebius syndrome News

Moebius Syndrome Foundation Thanks Kim Cunningham

Dear Moebius Community, Kim Cunningham, the Moebius Syndrome Foundation’s Executive Director will be resigning from the role as of June 2018. For the past three years with the Moebius Syndrome Foundation Kim has overseen significant growth and has worked across the Moebius community. With Kim’s help, the Foundation has redesigned the Website; grown our social media presence; invested more in research; created educational scholarships; hired staff members to grow our programming; conducted a Strategic Planning exercise with the Board; increased the number ...READ MORE »

Roshambo Sundraiser!

Posted by Kim Cunningham

We’re teaming up with ro•sham•bo baby sunglasses to help raise money for the Moebius Syndrome Foundation! Get 10% off your order with code: Moebius and ro•sham•bo baby will give 10% of your sale back to the Moebius Syndrome Foundation. Why should you buy these shades (besides from the fast that they are ridiculously adorable)? ro•sham•bo baby makes unbreakable sunglasses for babies, kids & adults. These Italian made shades offer 100% UVA/B/C protection with polarized lens options in all sizes! They even have ...READ MORE »

Foundation Welcomes New Board Members

Posted by Kim Cunningham

The Moebius Syndrome Foundation is pleased to announce that four new members have been added to the Board of Directors: Bryn Webb, MD, New York City Dr. Webb is Board Certified in Clinical Genetics and Pediatrics and is Assistant Professor in the Department of Genetics and Genomic Science & Pediatrics at the Ichan School of Medicine at Mt. Sinai Hospital in New York City. She is also the Co-Director of the Cleft & Craniofacial Clinic at Mt. Sinai Hospital, and is ...READ MORE »

Download Your Moebius Information Card!

Posted by Kim Cunningham

An adult within our community brought this fantastic suggestion forward – thank you! They wanted a simple card to carry with them that explains Moebius syndrome. It is business-card size, so it will easily fit in your wallet. Easy to give to a doctor, a teacher or a friend. The Moebius Syndrome Foundation website is on the card so people can get more information. This Moebius syndrome informational card is now available to download here (just right click and save as) ...READ MORE »

Tell the NIH Your Views

Posted by Kim Cunningham

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 »

2017 Moebius Syndrome Foundation Educational Scholarships Awarded

Posted by Kim Cunningham

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 »

Inaugural Webinar Scheduled: March 2, 2017

Posted by Kim Cunningham

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 »

FRAME Video on Moebius Syndrome

Posted by Kim Cunningham

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 »

Chelsey Thomas Featured on CBS!

Posted by Kim Cunningham

Call for Regional Coordinators!

Posted by Kim Cunningham

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 »

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