Moebius Syndrome Workplace Toolkit

Moebius Syndrome Workplace Toolkit Building Awareness and Belonging for All Faces

www.moebiussyndrome.org

events@moebiussyndrome.org

Recent research from AboutFace revealed that approximately 3 in 5 people with a facial difference reported being negatively impacted at work or within the context of work due to their facial difference.

With your help, we can change this together.

Table of Contents Awareness & Education Activities

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Advocacy & Inclusion Actions

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Community Connection Ideas

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Sample Content: Social Media

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About Moebius Syndrome

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Resources and Links

Page 7

Moebius Syndrome Awareness Day

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Copyright and Usage Notice Unauthorized copying, distribution, or modification of this content is prohibited. If you would like to add any of the Moebius Syndrome Foundation resources to your website, please get in touch with info@moebiussyndrome.org for express permission.

Photos and logos from this document or any Moebius Syndrome Foundation marketing materials and publications may not be replicated or used in any way without express written consent.

Workplace Toolkit

Bringing Moebius Syndrome Awareness to the Workplace Raising awareness at work helps build understanding and a sense of belonging. Whether you have a personal connection to Moebius syndrome or simply want to support the cause, there are many ways to get involved and different ways to spread awareness about Moebius. Every effort helps create a more inclusive workplace for all!

Awareness & Education Activities ●

Host a “Lunch and Learn” where someone with Moebius syndrome (or a family member) shares their experience, or show a short awareness video followed by discussion/Q&A. Face Equality International offers face equality training in the workplace and lunch and learn sessions. Learn more here.

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Create a Moebius awareness display in a breakroom, lobby, or shared space - include purple decorations, educational information, swag, and personal stories (see example picture on the front cover). Here are some ideas for putting together swag bags.

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Share Moebius stories or facts in company newsletters, Slack channels, or bulletin boards during Moebius Syndrome Awareness Week/Day (January 24), or during Face Equality Week, generally held in mid-May.

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Feature an internal blog post or staff spotlight on someone connected to Moebius syndrome (if comfortable) to put a personal face to awareness.

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Use your business/company social media channels to promote Moebius syndrome awareness (with the permission of the employee with Moebius syndrome)

www.moebiussyndrome.org

events@moebiussyndrome.org

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Advocacy & Inclusion Actions ●

Encourage HR or DEI teams to include information about Moebius syndrome (and facial differences in general) in diversity and disability awareness programs.

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Start a conversation on workplace accessibility - Review how meetings, social events, or communication styles could be more inclusive for individuals with facial differences or speech challenges.

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Add the Moebius Syndrome Foundation’s resources (like this toolkit or any of the resources on page 7) to employee resource groups or internal learning platforms.

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Invite guest speakers (virtual or in-person) to talk about disability inclusion or visible differences in professional spaces.

Community Connection Ideas ●

Encourage a purple day - Ask staff to wear purple and share why awareness matters. This could be done in conjunction with Moebius Syndrome Awareness day, or at any point in the year.

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Host a casual jeans/purple day fundraiser with small donations going to the Moebius Syndrome Foundation.

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Partner with local media or employee communications teams to highlight your company’s support for Moebius Syndrome Awareness Day, or employees/employee family members who are living with Moebius syndrome.

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Ask your facilities team about lighting your building purple in January.

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Encourage volunteerism - Employees can help with local awareness and/or fundraising events, or donate to the Moebius Syndrome Foundation through the website, or online fundraisers.

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Sample Content: Social Media Post for Moebius Syndrome Awareness Day Today we recognize Moebius Syndrome Awareness Day (MSAD)! Moebius syndrome is a rare neurological condition that can affect facial expression and movement. Our team is showing support by learning about facial differences and wearing purple to raise awareness. Learn more about Moebius syndrome: https://moebiussyndrome.org/ #MoebiusSyndrome #MoebiusSyndromeFoundation #MoebiusSyndromeAwarenessDay #MSAD #MSAD[Year] #FacialDifference

General Community Post Our team supports individuals and families affected by Moebius syndrome. Together, we’re learning about facial differences and acceptance. We are proud to be part of a community that celebrates every face and every voice. Learn more about Moebius syndrome: https://moebiussyndrome.org/ #MoebiusSyndrome #MoebiusSyndromeFoundation #FacialDifference #MoebiusSyndromeAwareness

Medical Provider Post Our team supports individuals and families affected by Moebius syndrome. Every day, we support people with facial differences and help them lead their best lives. We are proud to be part of a community that celebrates every face and every voice. Learn more about Moebius syndrome: https://moebiussyndrome.org/ #MoebiusSyndrome #MoebiusSyndromeFoundation #FacialDifference #MoebiusSyndromeAwareness

Educational Post Did you know? Moebius syndrome affects about 2-20 per million live births. It’s a rare neurological condition that can impact facial movement, speech, and other motor skills. Our team is helping people understand and celebrate what makes each person unique. Learn more about Moebius syndrome: https://moebiussyndrome.org/ #MoebiusSyndrome #MoebiusSyndromeFoundation #MoebiusSyndromeAwareness #FacialDifference

Please feel free to tag the Moebius Syndrome Foundation in posts: Facebook: @moebiussyndrome Instagram: @moebiussyndromefoundation LinkedIn: @moebius-syndrome-foundation

www.moebiussyndrome.org

events@moebiussyndrome.org

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About Moebius Syndrome What is Moebius syndrome?

Moebius syndrome is a rare neurological disorder that is present at birth and affects the cranial nerves that control facial expression and eye movement. People with Moebius syndrome are often unable to smile, frown, raise their eyebrows, move their eyes laterally or blink. Their eyelids may not close completely when blinking or sleeping, which can result in dry or irritated eyes.

Additional symptoms may also be present, including but not limited to: ● ● ● ● ● ● ●

Hearing loss Club Foot Strabismus (misalignment of the yes) Poland syndrome Sleep disorders Autism Spectrum Disorder Developmental delay/intellectual disability

How common is Moebius syndrome?

The causes of Moebius syndrome are unknown, although the condition probably results from a combination of environmental and genetic factors. Researchers estimate that the condition affects 2 to 20 per 1 million people.

Are there treatments available?

There is no cure for Moebius syndrome but there are treatments available. Children and adults with Moebius syndrome usually benefit from physical and speech therapy to improve their gross motor skills and coordination, and to gain better control over speaking and eating, as well as occupational and sensory integration therapies. Strabismus (misalignment of the eyes) is usually correctable with surgery. Limb and jaw differences may often be improved through surgery. Moebius syndrome is not progressive and will not get worse over time.

Supporting Employees With Moebius Syndrome Those with Moebius may need assistive devices at work, such as text-based communication apps for phone and video meetings or closed captioning on video calls. Screen breaks or flexible scheduling to reduce visual strain, adjustable monitor height/angle to help with limited eye movement, and non-fluorescent lighting or desk lamps instead of overhead lights may be helpful.

More Detailed information can be found here: https://moebiussyndrome.org/what-is-moebius-syndrome/

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Resources and Links Moebius Syndrome Awareness Day Materials Moebius Syndrome Awareness Day (MSAD) Resources (more information on the next page) https://moebiussyndrome.org/moebius-syndrome-awareness-day/ Request brochures, informational material, and swag from the Moebius Syndrome Foundation for giveaways, gifts, decorations, etc. Please note that supplies may be limited, depending on inventory. https://bit.ly/MSFSupplies Purple food and decoration item ideas: https://bit.ly/PurpleItems

HR Training & Workplace Toolkits Face Equality International offers a face equality training lunch and learn session AboutFace Canada offers a HR toolkit, Including information on workplace bullying, employment accommodations, recruiting, and tips for addressing questions about facial differences

Short Educational Videos to Help Better Understand Moebius Syndrome

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https://vimeo.com/752980715 https://vimeo.com/128799693

Support the Moebius Syndrome Foundation ●

Visit moebiussyndrome.org/waystogive to explore donation options, including corporate matching and stock gifts.

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Contact info@moebiussyndrome.org for assistance in setting up these programs.

www.moebiussyndrome.org

events@moebiussyndrome.org

7

Moebius Syndrome Awareness Day (January 24) Moebius Syndrome Awareness Day is an annual event celebrated globally each year on January 24th - the birth date of Professor Paul Julius Moebius, the doctor who first diagnosed the condition in 1888.

Since 2011, Moebius Syndrome Awareness Day has been embraced globally by the Moebius community in order to raise awareness. The Moebius Syndrome Foundation celebrates Moebius Syndrome Awareness Day (MSAD) by sharing information about Moebius syndrome, offering financial support and resources to approved events, encouraging people to wear purple (the official color of Moebius syndrome), and raising awareness through various means and channels.

Find many resources for MSAD here: https://moebiussyndrome.org/moebius-syndrome-awareness-day/

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