Resources
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.
COVID-19 RESOURCES FOR THE MOEBIUS COMMUNITY
Click here for COVID-19 Resources
VIDEOS ON RESPIRATORY ISSUES & SLEEP DISORDERS FROM THE 2016 CONFERENCE
PUBLICATIONS
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.
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.
Exceptional Parent Magazine
EP GUIDE 2018: Navigating Special Needs Resources
Efficient Recognition of Facial Expressions Does Not Require Motor Simulation
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).
Protection for Dry Eyes
The Dry Eye Shop is a resource for products and information to care for and protect dry eyes.
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.
Roshambo Sunglasses – Participate in our Sundraiser!
We’re teaming up with ro•sham•bo baby sunglasses to help raise money for the Moebius Syndrome Foundation! Get 10% off your order with code: Moebius and ro•sham•bo baby will give 10% of your sale back to the Moebius Syndrome Foundation. Why should you buy these shades (besides from the fast that they are ridiculously adorable)? ro•sham•bo baby makes unbreakable sunglasses for babies, kids & adults. These Italian made shades offer 100% UVA/B/C protection with polarized lens options in all sizes! They even have new mirrored lens options! The prescription-friendly frames are BPA free, small parts tested, and so light they can float! The soft and safe material is designed for little faces, hands and mouths. ro•sham•bo baby is so confident your kids can’t break them, they offer a full damage and lens replacement guarantee. Most importantly, you are helping support our organization, as well as ro•sham•bo baby’s autism charity partner, Surfers Healing, with every purchase.
Visit www.roshambobaby.com to participate! And don’t forget to use our code!
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
Fully Accessible Guide to Smart Home Tech for the Disabled and Elderly
http/www.reviews.com/blog/fully-accessible-guide-to-smart-home-tech/
WEBINARS
Webinars of interest to people with Moebius syndrome are now online for viewing:
Congenital Facial Paralysis by Bryn Webb MD
https://www.youtube.com/watch?v=jV1FcEYalso
Facial Neuromuscular Retaining by Jacqueline Diels OT
https://www.youtube.com/watch?v=sCZhGApVtOk
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
https://www.youtube.com/watch?v=_v8Kr9TlFE8
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.
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 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
Download the Moebius Information Card!
This Moebius syndrome informational card is now available to download here (just right click and save as) or upload with an outside service, like Vistaprint, where you can order a larger quantity. This is a great item to hand out at Moebius Awareness events!
Moebius Syndrome Handout for Healthcare Providers
Sheila Robb created this form with helpful definitions and descriptions of Moebius syndrome to handout to her daughter’s doctors. She has shared this customizable document so others might have it on hand when visiting a new healthcare provider. Please feel free to add your child’s name, edit pronouns, and applicable symptoms. Moebius Syndrome & Our Child’s Involvement
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
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