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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.
If you are in immediate distress, please contact 988 or your local emergency number. These resources are intended to support, not replace, professional medical care.
988 Suicide & Crisis Lifeline
Call or text: 988
Website: https://988lifeline.org
Available 24/7, free and confidential
Crisis Text Line
Text HOME to 741741
Website: https://www.crisistextline.org
Available 24/7
Moebius Syndrome Foundation Conferences
Website: https://moebiussyndrome.org
Phone:(844) 663-2487
Private Facebook Group
The Home for the Moebius Community
Moebius Syndrome Foundation Instagram
Moebius Syndrome Foundation TikTok
Articles
Children with facial difference have a lot to teach us about body image
Healthy Body Image and Self-Esteem for Teens With Facial Differences
People With Facial Differences See Their Stories Reflected In Wonder
Organizations
Face Equality International
Website: https://faceequalityinternational.org
Phone: Not publicly listed
AboutFace
Website: https://www.aboutface.ca
Phone: 1-800-665-3223
Open Path Psychotherapy Collective
Website: https://openpathcollective.org
Phone: Not publicly listed (provider-specific contact)
7 Cups
Website: https://www.7cups.com
Phone: Not available (online platform)
Give an Hour
Website: https://giveanhour.org
Phone: Not publicly listed
National Alliance on Mental Illness (NAMI)
Website: https://www.nami.org
Phone: 1-800-950-6264 (NAMI HelpLine)
Email: info@nami.org
Art journaling
Free e-course in art journaling at Mindful Art Studio
YouTube tutorials on art journaling for beginners and beyond with Maremi SmallArt
Free virtual art workshop for beginners with Your Artful Journey.
Photography
YouTube tutorials on photography basics using a phone or other camera at iPhotography.
YouTube tutorials about visual photography education with Karl Taylor.
Driving with Moebius Syndrome
Panel discussion about driving with Moebius Syndrome during the MSF 2023 Conference.
Building Confidence with Moebius Syndrome
A webinar featuring Steven Maldonado and Dr. Tara Lewis.
There is something special about talking with someone who understands your experience without needing it explained. For many people in the Moebius syndrome community, that kind of connection can be hard to find close to home. Moebius Connections is here to help close that distance.
Building on the mentorship and friendship program we first offered in 2022, we have redesigned Moebius Connections based on what we learned from you. The result is a program centered on personal, meaningful support that helps community members connect virtually, wherever they live.
Moebius Connections is open to individuals ages 13 and up in the Moebius syndrome community. Whether you are hoping to build a lifelong friendship, talk with a peer who understands, or find guidance as you navigate school and career decisions, there is a place for you here.
Whether you want to make a new friend, share your story, find a mentor, or be that support for someone else, we would love for you to join us.
Know someone who might benefit? Please share this post with them. The more people who take part, the more opportunities there are for meaningful matches across our community.
Check out these articles for ideas and information on how adults with Moebius syndrome have developed their careers.
Madeline Weber-Myers Talks Challenging Standards of Beauty and Living with Moebius
Brianna Kelley Talks Receiving 2026 MSF Educational Scholarship and Being an Advocate for Moebius
Shelby Kennedy Discusses Life with Moebius, and Never Giving Up on Your Dreams
Kyle Card Talks Science, Humor, and Living Life With Moebius
Running for Office with Moebius Syndrome: An Interview with Jensen Jennings
This is MoebiUS: Leah Richter-Maldonado
Jessica Maher Talks Teaching at Her Old High School and Loving Herself
Amy Schuster Talks Navigating Work Challenges, Living with Moebius, and Loving Life
More about Kyle Card: Traversing STEM With Disabilities: Spotlight on Kyle Card
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.
Moebius Syndrome Foundation Educational Scholarships
An annual scholarship opportunity for students advancing their education in college, university, technical, or trade schools. Learn more here.
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.
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.
Writing a college application essay can be challenging. Have you considered featuring Moebius syndrome as part of your story? Julia Bryant, a young woman with Moebius syndrome, wrote her college essay about her lived experience. Read it now. (Note: This essay cannot be reproduced or replicated in any way without the express written permission of Julia Bryant. Copying this essay or replicating it is considered plagiarism.)
I am not defined by my disability, nor would I ever allow myself to have that mindset. I can and will do anything I set my mind to with all of the grit, hard work, and determination that I have gained over the past several years. I am strong, I am unique, and I am capable of anything no matter how big or small.
Building Confidence with Moebius Syndrome
A webinar hosted by the Children’s Craniofacial Association and the Moebius Syndrome Foundation.
There is something special about talking with someone who understands your experience without needing it explained. For many people in the Moebius syndrome community, that kind of connection can be hard to find close to home. Moebius Connections is here to help close that distance.
Building on the mentorship and friendship program we first offered in 2022, we have redesigned Moebius Connections based on what we learned from you. The result is a program centered on personal, meaningful support that helps community members connect virtually, wherever they live.
Moebius Connections is open to individuals ages 13 and up in the Moebius syndrome community. Whether you are hoping to build a lifelong friendship, talk with a peer who understands, or find guidance as you navigate school and career decisions, there is a place for you here.
Whether you want to make a new friend, share your story, find a mentor, or be that support for someone else, we would love for you to join us.
Know someone who might benefit? Please share this post with them. The more people who take part, the more opportunities there are for meaningful matches across our community.
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 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 Judith Heumann
Beacon Press, 2021
In this young reader’s edition of Judy’s memoir, Being Heumann, Judy recounts her life battling for equal access in an inaccessible world. Heumann was one of the champions behind passing Section 504, a key U.S. disability rights legislation.
By Ann Clare LeZotte
Scholastic Press, 2020
Show Me A Sign is the first in a trilogy depicting the true history of a thriving deaf community on Martha’s Vineyard in the early 19th century. Written by a deaf author, this book covers a community that speaks nearly entirely in American Sign Language (ASL). The companion books are Set Me Free and Sail Me Away Home.
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.
By Holly Goldberg Sloan
Rocky Pond Books, 2014
A twelve-year old genius obsessed with medical conditions and finds comfort in counting by 7s. When her parents suddenly die in a car crash, she has to find her way in the world.
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 Brian Selznick
Scholastic Press, 2011
A graphic novel featuring alternating stories. In one, Ben is struck deaf moments after discovering a clue to his father’s identity. In another, Rose follows a trail of a loved one to a museum – 50 years before Ben. This book has been adapted to a movie featuring Julianne Moore and Michelle Williams and is available through major streaming platforms.
