Publications · Products · Webinars · Books · Miscellaneous

The Moebius Syndrome Foundation or its Board of Directors does not diagnose Moebius syndrome in individuals nor does it endorse particular medical professionals, treatments, products or services.

VIDEOS ON RESPIRATORY ISSUES & SLEEP DISORDERS FROM THE 2016 CONFERENCE

PUBLICATIONS

Moebius Syndrome Foundation Brochure

The Moebius Syndrome Foundation brochure is included with the informational packets we send to all who request them. To request a copy, email us at info@moebiussyndrome.com. You can also download a PDF of the Brochure.

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.

 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.

PRODUCTS

The Moebius Syndrome Foundation or its Board of Directors does not diagnose Moebius syndrome in individuals nor does it endorse particular medical professionals, treatments, products or services.

Special Bottles

There are several types of specialized feeding products that can help with feeding in infants with Moebius syndrome:

Dr. Brown’s

The new Dr. Brown’s Medical product line of infant feeding solutions offers innovative products to support babies with specific feeding needs. The Dr. Brown’s Specialty Feeding System was created in partnership with medical experts – speech language pathologists, occupational and physical therapists, clinical nurse specialists, neonatologists, lactation consultants, etc. to offer a products with a significant medical advantage.

As one of the line’s premier offerings, the Specialty Feeding System is a unique bottle/nipple/valve system designed specifically to assist in the management and treatment of complicated oral feeding issues.  This bottle system will be beneficial for infants and bottle-fed children identified with severe to profound difficulty in efficiently expressing a fluid bolus during sucking. Infants with the following conditions – cleft lip/palate, ankyloglossia, high-arched palate, oro-neuromotor dysfunctions, congenital heart disease, common or rare syndromic sequences and/or craniofacial anomalies will demonstrate strong outcomes while using the Dr. Brown’s Specialty Feeding System.

To learn more about this unique system, please visit www.drbrownsbaby.com/valve. For more information on all products from Dr. Brown’s Medical, please visit email medical@handi-craft.com.

Medela

Medela offers several types of bottles for babies with feeding problems including neurological challenges or facial / oral problems. One is their Special Needs Feeder (formerly called Haberman Feeder) that allows a variable flow rate and has a one way valve. Contact Medela for more information at www.medela.com.

Pigeon Bottle

Another special bottle is the Pigeon Bottle from Havenhall Ply Ltd. in Australia. For more information, visit www.pigeonbaby.com.au and Adiri bottles (www.adiri.com).

Sunglasses

Infants, children and adults with Moebius syndrome may find that wearing sunglasses when outside increases their comfort and safety of their eyes. Hats with brims also help increase comfort.

Parents have recommended children’s frames from Julbo, Baby Banz, Miraflex (for transitions) and Rayban.

Speech & Assistive Technology

Sign language for babies and children – Visit Signing Time website»

Assistive Technology – Augmentative communication devices such as Proloquo2Go on iPad or iPhone

WEBINARS

Webinars of interest to people with Moebius syndrome are now online for viewing:

Congenital Facial Paralysis by Bryn Webb MD

http://www.facialparalysisfoundation.org/webinars/

Facial Neuromuscular Retaining by Jacqueline Diels OT

http://www.facialparalysisfoundation.org/webinars/

Facial Paralysis by Andre Panossian MD

https://plus.google.com/u/0/events/cvns9pel9nfmjk9r7rcvd8of0so

Safe Feeding & Speech Clarity by Sara Rosenfeld-Johnson MS, CCC-SLP

www.talktools.com/parents

BOOKS

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 at bookstores and from Amazon.com.

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.

Miscellaneous Resources

PACER’s National Bullying Prevention Center
PACER’s National Bullying Prevention Center actively leads social change, so that bullying is no longer considered an accepted childhood rite of passage. PACER provides innovative resources for students, parents, educators, and others, and recognizes bullying as a serious community issue that impacts education, physical and emotional health, and the safety and well-being of students.

LimbDifferences
An online resource for families and friends of children with limb differences www.LimbDifferences.org

Pierre Robin Network, Inc.
www.pierrerobin.org

Genes in Life
The Genetic Alliance created www.genesinlife.org that includes resources and tools on genetics.

The Mighty – http://themighty.com/

Disability Scoop – http://www.disabilityscoop.com/

Beyond Face Value by Vicki McCarrell – Page 1 Page 2