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 AND WEBINARS
Inclusively Reading Kids book club with Katie Lockwood, author of Why Me, Mama?
Inclusively Reading Kids book club with Amy Webb, author of When Charley Met Emma and Awesomely Emma
Ideas for Planning an Awareness Event, October 2022 | Presented by Jen Garvey and Cori Kopke
A Face for Picasso Book Club, November 2022 | Presented by Ariel Henley, moderated by Kathryn Kraus McClure
Medical Transition: Facial Difference | Pediatric to Adult Care, October 2022 | Children’s Craniofacial Association and MSF
Caregiver Burnout, September 15, 2022 | Presented by Rhonda Robert, Ph.D., and Diana Guzman, MA, LPC
Sleep Concerns in People with Moebius Syndrome, July 16, 2022 | Presented by Greg Osborne, DDS, D-ABDSM, FADI, and Sharon Shtil, Ph.D., DBSM
Genetic Research into Moebius Syndrome, July 15, 2022 | Presented by Elizabeth Engle, M.D., Ethilyn Jabs, M.D., Irini Manoli, M.D., Bryn Webb, M.D.
Scientific Advisory Board Q&A, July 17, 2022 | Presented by the Moebius Syndrome Foundation Scientific Advisory Board
Limitless, July 16, 2022 | Presented by David Garcia, Ph.D.
Parents of Medically Complex Children, June 16, 2022 | Presented by Kathy Kraus and Mary Osborne | Handout: 10 Tips for Toughness
What I Wish My Parents Had Known: Young Adults with Moebius Talk to Parents of Moebius Children, July 17, 2022 | Presented by Jessica Maher, Austin Halls, Alli Johnson
Orthopedic Manifestations in Moebius Syndrome, March 2, 2022 | Presented by Phillip McClure, MD
Back to School and IEP/504 Tips and Resources, July 17, 2022 | Presented by Destiny Bachman and Leah Richter Maldonado
Dental Basics for Individuals with Moebius Syndrome, October 4, 2021 | Presented by Gregory Osborne, DDS
Genetic Research Update, September 21, 2021 | Presented by Elizabeth Engle, MD, Ethylin Jabs, MD, Irini Manoli, MD, and Bryn Webb, MD
Moebius Syndrome Panel (general information about living with Moebius syndrome), September 19, 2021 | Moderator: Greatness Adewumi; Panelists: Kathleen Bogart, Bryn Webb, Roland Bienvenu, Steven Maldonado
Eye Basics for People with Moebius Syndrome, August 16, 2021 | Presented by David Hunter, MD
Back to School for Parents, August 9, 2021 | Presented by Brittni Jones, Rebecca Maher, Debra Morton, and Leah Richter
Scientific Advisory Board Q&A Panel, July 22, 2021 | View Transcript
Employment Webcast for Families, July 1, 2021 | Presented by: Sean Roy, Transcen | View Transcript
Dating and Relationships, June 19, 2021 | Presented by: Zoe Cross | Moderated by: Kelsey Ferrill | View Transcript
Management of Respiratory Symptoms, June 15, 2021 | Presented by: Hollis Chaney, MD | Moderated by: Rebecca Maher | View Transcript
Confidence in Adults & Teens, June 14, 2o21 | Presented by: Tara Lewis, EdD, and Steven Maldonado, MB | View transcript
Speech and Feeding, May 18, 2021 | Presented by: Renee Roy Hill, MS, CCC-SLP, COM®️ | View transcript
New Parent Resources, May 10, 2021 |Presented by: Vicki McCarrell | View transcription
Baby Sign Language for Beginners, May 3, 2021 |Presented by: Emily Calhoon | View transcription
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.
There are several types of specialized feeding products that can help with feeding in infants with Moebius syndrome:
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.
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.
Another special bottle is the Pigeon Bottle from Havenhall Ply Ltd. in Australia. For more information, visit www.pigeonbaby.com.au.
Protection for Dry Eyes
The Dry Eye Shop is a resource for products and information to care for and protect dry eyes.
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!
Hats can also be a helpful way of preventing the sun from getting into your child’s eyes. Derr & Co creates cute and stylish baby hats that are designed to be a functional way to protect the eyes. Get a 10% discount on their products when you purchase through this link.
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
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.
An online resource for families and friends of children with limb differences www.LimbDifferences.org
Pierre Robin Sequence Information
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/