PUBLISHED ARTICLES

Please click on each photo to read their articles.

Kathleen Bogart, PhD

Dr. Bogart has written many articles related to disability, mental health, and living with Moebius syndrome.

Rianna de Bono-Smith

Moebius Syndrome Awareness Day: Learn More About the Rare Disorder

Zoe Cross

Dating With A Difference and the Role of Dating Platforms

POETRY

Members of the Moebius community are welcome to submit their poetry.

Yann Chevrot

A Clear Fountain, by Yann Chevrot

We Smile with Our Hearts, submitted by Yann Chevrot, written by Emily Pello

Come Back Little Girl, by Yann Chevrot

BROCHURES & PAMPHLETS

Moebius Syndrome Foundation Brochure

The PDF may be downloaded here

and print copies are available upon request.

A Guide to Understanding Moebius Syndrome

This booklet is a publication of the Children’s Craniofacial Association. It is included with informational packets from the Moebius Syndrome Foundation and can also be requested by emailing us at info@moebiussyndrome.com. The PDF may be downloaded from the CCA web site. The booklet is also available in Spanish.

Moebius Syndrome

The 18-page booklet on Moebius syndrome was published by AboutFace and the Cleft Palate Foundation. For information on the cost and to order a copy, contact AboutFace in Canada at

www.aboutface.ca.

Moebius Syndrome Foundation Welcome Booklet

This booklet is a great way to get introduced to the Moebius Syndrome Foundation and get access to resources for those new to the Moebius community. Read it here.

 Facing It Together

This is a workbook and DVD to provide support, insight and effective strategies to deal with some of the major issues that parents face during the first few years of a child’s life. Facing it Together is free for Canadian parents of children under the age of 5 with a facial difference, or available for purchase. For information on the cost and to order a copy, contact AboutFace in Canada at www.aboutface.ca.

The Circle of Care All: Guidebook for Caregivers of Children with Rare and/or Serious Illnesses.

Read it here.

Exceptional Parent Magazine

EP GUIDE 2018:  Navigating Special Needs Resources

Efficient Recognition of Facial Expressions Does Not Require Motor Simulation

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BOOKS

FACE IT: Facial Disfigurement and My Fight for Face Equality

James Partridge was eighteen when he was severely facially burned. FACE IT tells how he found a way to live happily with his distinctive face in our face-perfect society, turned the lessons he’d learned into practical empowerment for others with facial disfigurements, and launched the global campaign for ‘face equality’ for everyone, whatever their face looks like. FACE IT looks prejudice in the eye and refuses to blink.

Book orders

Normal, A Mother and Her Beautiful Son

By Magdalena Newman with Hilary Liftin

Houghton Mifflin Harcourt $25.00

Normal, One Kid’s Extraordinary Journey 

(Young Reader’s Edition)

By Magdalena and Nathaniel Newman

These two new books add to the small number of books that exist about craniofacial conditions.  Normal, A Mother and Her Beautiful Son was written by Nathaniel’s mother about their family’s journey with Nathaniel who was born with Treacher Collins syndrome with severe symptoms.  Normal, One Kid’s Extraordinary Journey was written by Nathaniel and his mother, and contains some (humorous) illustrations.  They tell the same story, one for adults and the other for younger readers.  Grades 5 to 10 were mentioned; a younger child with a craniofacial condition and familiar with surgeries could be interested in Nathaniel’s book, either reading it or having it read to them.

The author chronicles their extraordinary situation in which serious health crises occurred often, dealing with the constraints of both a gastrostomy and tracheostomy tube since Nathaniel’s infancy and many high risk surgeries.  This is while she herself has a second child, cancer and a recurrence, many moves in different states and frequent job changes of Nathaniel’s father.  Despite these uncommon and difficult challenges the family is resilient, upbeat and thankful; they retain a sense of humor, especially Nathaniel.  Of special interest is how the book and then the movie of Wonder positively affected Nathaniel and the family.  Nathaniel explains how wonderful the family’s dogs are, how he usually appreciates having his brother, and that he doesn’t feel defined by Treacher Collins.

The Boy Who Smiles with His Heart (A Moebius Syndrome Story)

This is a story about a mother with a son born with Moebius Syndrome among other medical issues. Throughout this book, she takes you through the first 9 years of his life. Experiencing many emotions as you read, each page will leave you wanting more. So take a journey through the eyes of this mother as she tells you about the boy who smiles with his   https://www.amazon.com/Smiles-Heart-Moebius-Syndrome-Story/dp/1304957934

Super Power Baby Project

By Rachel Callander
Mary Egan Publishing, 2015

This is an award winning photographic book of many children with genetic conditions along with descriptions of the children by their parents as well as by the author. It celebrates all the children and was inspired by the author’s daughter’s life. Watch the TedXAuckland talk by Rachel Callender.

Far From The Tree
Parents, Children, and the Search for Identity

By Andrew Solomon
Scribner, 2013

This is a comprehensive, definitive book on parenting a child with a disability or difference. More information is at www.farfromthetree.com where people are welcome to share their experiences.

About Face

By Sage Sohier
Columbia College Chicago Press, 2013

Photo essay book with patients from the Facial Nerve Center at the Massachusetts Eye and Ear Infirmary in Boston. Photos are simple and beautiful.

Undesirable elements: real people, real lives, real theatre 

By Ping Chong
Theatre Communications Group, 2013

This book documents the “undesirable elements” theatre performances that have taken place in the US and internationally. It includes the scripts of some of the performers, and Moebius syndrome is represented.

The Invisible Smile, Living without facial expression

By Jonathan Cole with Henrietta J. Spaulding

Oxford University Press, 2009

An academic text, discusses life experiences of a number of adults and several children with Moebius syndrome. Available from Oxford University Press or check your local library system to find this book.

Eye of the Beholder

By Laura Greenwald
Published by Kaplan, 2009

True Stories of People with Facial Differences and their Quest for Acceptance. Includes a chapter on Moebius syndrome.   Available from Amazon.com and KaplanPublishing.com.

Watch video of author discussing her book

Children with Facial Difference

By Hope Charkins
Woodbine House, 1996

Out of print, but copies may be available at Amazon.com  and libraries.  Some contributions are by parents of children with Moebius syndrome.

The Church of 80% Sincerity

By David Roche
Perigee, 2008

David Roche’s book takes the reader on a journey of his life experiences, with stories and anecdotes that range from spiritual to raucous.  David has a craniofacial condition, venous malformation, and has been a presenter at several Moebius Syndrome Conferences.  Available at bookstores and at Amazon.com.

Como é ter Sìndrome de Moebius?

By Amanda Nascimento
pcn Comunicacăo, 2015

Written in Portuguese, this book explains Moebius syndrome. To order, contact amandanovonascimento@hotmail.com.

Moebius Syndrome — Betroffene und Fachleute informieren 

This book on Moebius sydrome is in German and is available from the German Amazon store. For more information, contact Falco Schleier at falco.schleier@googlemail.com.

Children’s Books

Wonder

By RJ Palacio
Random House, 2012

This is the phenomenal story of a boy with a craniofacial condition, a must-read for all of us. Also check out 365 Days of Wonder and Auggie and Me.

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.

Smile For Me

By Linda Lawrance

This is a children’s book about Moebius syndrome written by a mother in Australia. For more information, contact lindaglawrance@mail.com.

It’s Okay to Ask

By Nancy Carlson
Gillete Children’s Specialty Healthcare, 2014

This picture book is for ages 3 to 8 and is about children encountering people with disabilities or complex medical conditions. The flipbook can be read online or the book can be ordered at https://www.gillettechildrens.org/giving/support-curepity/its-okay-to-ask/.

In Your Face
The facts about your feature

by Donna M. Jackson
Penguin Young Readers, 2004

For ages 9 and up, facial features and cultural differences are explained.  There is a chapter on Moebius syndrome.