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.
Children’s Craniofacial Association and the Moebius Syndrome Foundation
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:
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.
The Moebius Syndrome Foundation offers scholarships for students with Moebius syndrome.
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.
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.
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.
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.