Living with Moebius syndrome

Information for Teens With Moebius Syndrome

Navigating your teenage years with Moebius syndrome may feel full of emotion for both you and your parents. Below you will find resources for teenagers and their families as they go through this unique time.

October 2022

Medical Transition with a Facial Difference: Pediatric to Adult Care

Children’s Craniofacial Association and the Moebius Syndrome Foundation

June 14, 2021

Confidence in Adults & Teens

Presented by Tara Lewis, EdD, and Steven Maldonado, MB

View transcript

 

Image & Self Esteem

College Scholarships

One of the best ways to pay for college is with a scholarship. Scholarships are offered by private companies, organizations, schools and more, and the funds do not have to be paid back. Here is a listing of scholarship options for students with disabilities.

College Guide for Students With Disabilities

This guide offers in-depth details in several areas, including:

  • Legal rights of students with disabilities
  • Services colleges can or need to make available
  • Required accommodations for students
  • Technologies and helpful apps for students

Kaela Anderson Memorial Foundation Scholarship

Since 2001, the Kaela Anderson Memorial Foundation has been offering the Moebius Syndrome Scholarship Award to students who are U.S. citizens and have been diagnosed with Moebius syndrome.

#RAREis Scholarship Fund

Thanks to the support of Amgen, The EveryLife Foundation offers $5,000 scholarships for individuals with rare diseases each year. 

The Moebius Syndrome Foundation offers scholarships for students with Moebius syndrome. 

Become a PEARLS Project Ambassador for Positive Exposure!

Positive Exposure is looking for new people to become P.E.A.R.L.S Ambassadors.

The P.E.A.R.L.S Project is a groundbreaking educational program that invites K-12 students, teachers, and healthcare providers to learn about the real life experiences of individuals and their families living with genetic, physical, cognitive and behavioral differences.

Audience participants are introduced to a photo exhibition of people living with difference (PEARLS Ambassadors), which then comes alive, as the children, adults and families from the photographs, blog about their lives and experiences through a password protected, online forum. The POSITIVE EXPOSURE team approves all posts.

To apply to become a P.E.A.R.L.S Ambassador, please contact Liz Grossman.

Suggested Reading For Young Adults

Wonder

By RJ Palacio
Random House, 2012

This chapter book describes the phenomenal story of a fictional boy with a craniofacial condition. The New York Times best-selling book has also been adapted to a movie. See the companion books; 365 Days of Wonder and Auggie and Me.

 

Hear Me Book Cover

Hear Me

By Kerry O’Malley Cerra
Carolrhoda Books, 2022

A fictional story of a young woman who is losing her hearing while her parents are pushing for cochlear implants. Written by a woman who lost her hearing over time and opted to use cochlear implants. 

 

El Deafo 

By Cece Bell
Harry N. Abrams, 2014

The target audience is ages 8 – 12, but this is perfect for anyone, including adults, who are interested in reading a graphic novel about a girl who is hearing impaired. It is heartfelt and humorous, and based on the author’s experiences as a child.