Moebius Syndrome Foundation

Our goal is to support the Moebius community through research initiatives to help achieve a better understanding of the causes of Moebius syndrome and also to help identify treatments to help with common Moebius symptoms. In addition to this, our priorities are supporting the families and individuals affected by Moebius syndrome by hosting conferences that offer research opportunities, private consults with medical professionals, social and networking, educational sessions, and opportunities to become closer as a community. The Moebius Syndrome Foundation awards conference scholarships to those with a financial disadvantage, and college scholarships each year to deserving students with Moebius. We support the Moebius community by offering new members a welcome packet, hosting a mentorship program, and virtual events to keep the Moebius community informed and connected. We create awareness about Moebius syndrome through our social media platforms, biannual newsletters, partnering with other organizations, and advocating for awareness and change. Our goals are to give the Moebius community answers, hope, and a place to call home.

Good Health and Well Being
The Moebius Syndrome Foundation is committed to improving the good health and well-being of the Moebius community through research initiatives to help achieve a better understanding of the causes of Moebius syndrome and also to help identify treatments to help with common Moebius symptoms. We also provide regular private group discussions for adults, teens, and children with Moebius syndrome, and parents of children with Moebius so that they can achieve a great feeling of emotional support and understanding. Our biennial national conferences are often described as life-changing experiences for our attendees, as they are able to connect with others that uniquely understand the common challenges of living with Moebius syndrome. This gives our members a better feeling of overall wellbeing and support.

Reduced Inequalities
The Moebius Syndrome Foundation is acutely aware of the inequalities that individuals with Moebius syndrome and other craniofacial conditions and disabilities live with each day. From workplace discrimination, bullying at school and in the workplace, and the general public misjudgment, individuals with Moebius syndrome often find themselves targeted and affected. It is our goal to raise awareness about these inequalities by utilizing our vast social media platforms to create awareness, raise important topics, share appropriate educational information from creditable partner organizations, and encourage our members to join these conversations and share our messages. We also work with highly skilled professionals to offer employment advice to families and individuals either preparing for the workforce or already employed. We offer educational sessions both at the national conferences and virtually that help members of our community understand the ADA laws, their rights, and give solutions to help address the times when they face inequality. We also partner with wonderful organizations that provide anti-bullying and self-esteem programs for our children and teens. This helps our youth better understand how to recognize buying, injustices, and how to positively address these issues. In addition to all the above, we follow and coordinate with partners to promote legislative change for persons with disabilities and rare diseases.