Press Release: 3rd Annual Face Equality International Week 2021

 

Face Equality Week 2021:

A call for greater public education on facial differences by a global alliance of NGOs.

May 17-24 2021 -- Many of the barriers to equitable access to work, education, and fulfilment for someone with a facial difference are largely due to a lack of public understanding, along with limiting societal attitudes, and pervasive stigma. During Face Equality International Week, May 17-24, 2021, CCA will join Face Equality International's 35 global, member NGOs and nonprofits in an effort to reduce stigma and break down these barriers. 

Face Equality International is compiling expert research, materials, and guidance from across the sector in an effort to amplify the voices of those with direct experience in looking different and to advocate for change among schools, businesses, communities and with key audiences such as media professionals and teachers. 

After over a year of mask-wearing and social restriction, arguably the issue of facial differences is less exposed than ever.

CCA Board member, Patricia Simon, agrees with that point and shares in a recent article, “A mask somehow gives you control over your life [as a person with a craniofacial issue]. It allows you to decide when to reveal your real face. However, it also signals that you have no control over other people’s reactions. Removing one’s mask reveals one's vulnerability. It creates anxiety. Removal of the mask brings back surprise, shock, and stares.”

Facial difference is a globally neglected human rights issue. At CCA, we offer a robust educational program called the #ChooseKind Initiative. We offer curriculum to students from Pre-K to high school, work with students and adults to help them shape their story through our Speakers Bureau program, and produce educational video content to support efforts to reduce the stigma that exists.

The International Face Equality Week campaign will include a variety of activities in addition to the launch of the educational resource hub in order to amplify the voices in the facial difference community by providing a moment in the year to highlight their lived experiences and to engage with a wider society. Activities will include a selfie campaign and dedicated Instagram filter as a direct challenge to the ‘look-perfect’ culture associated with the concept of a selfie.

FEI will also run a series of educational sessions on Facebook Live throughout the week featuring key voices from the community offering life lessons and practical guidance on issues including representation in books and film, teaching face equality in the classroom, and how to share your story to bring about change.

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About Our Organization: Children's Craniofacial Association, a 501(c)(3) nonprofit organization founded in 1989 and serves over 20,000 families per year. CCA's mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look.

Media Inquiries Contact: 

Erica (Mossholder) Klauber 

(214) 570-9099 [email protected]

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7 Speech Therapy Apps To Download Now For At Home Practice

By Kara Jackman 

Whether you are practicing at home or must stay at home because of COVID-19, speech therapy will always be part of the lives of our craniofacial kiddos and kids at heart. Here are some great pronunciation pathways to pursue (say that five times fast!). 

Smile Train Speech Games (Available in Apple 

App Store and on Google Play)

Starting with simple, free, and reputable, Smile Train’s Speech Games app is a good one for every day practice. Based on the letters needing some extra love, you are presented with either a story or a game to play that utilizes these letters. The images are not animated for the stories, but the words are displayed on the screen and your child will be able to advance the story on each screen. You can read to yourself or listen to the story read to you. There are six games per each sound that range from learning the sounds, to practicing syllables to memory, and a “drag the word” word building game. Simple, free, and efficient this is one app to have on your phone or tablet at all times.

SpeakEasy (Available in Apple App store, Android, Google Play)

SpeakEasy

SpeakEasy is a slightly more robust app that allows you to tailor usage to your child’s needs. Both caregivers and speech pathologists can make use of this app that helps children from ages 0-5 years old. Kyla from SpeakEasy told us more about the app, saying, "We currently have material for 0-5 years old, offered in 4 stages (preverbal through full sentences). We do not focus on age, but rather training parents and caregivers, offering ideas for simple activities they can do at home." This strategy helps reduce screen time for your kiddos. This app is pay-to-play at $19.99 per month, $9.99 per month when billing annually ($119.88/year). SpeakEasy was developed and maintained by a husband and wife team that work together to provide a high-quality product that could be a great fit for your family. 

Otsimo Speech Therapy (Available in Apple App Store and Google Play for Android) 

Otsimo Speech Therapy is a comprehensive app that features development of motor skills for the mouth and lips and speech skills, too. A variety of consonants, words, phrases are featured for practice. Caregivers may choose to coordinate with their speech pathologist, setting the curriculum by answering questions in the developmental test to customize your child’s practice and track their progress. The report generated will give you a regular practice schedule that takes into account your child’s age and attention level. You may create an account for more than one child. The exercises allow your child to watch their peers speak as they offer three different vocalizations or pronunciations for letters, words, and phrases. Then the child will enjoy a little fun with a funky filter selfie, practice their skills once more, and finally play a quick and easy game. The app features cute animations, videos of real children speaking, and the ability for your child’s voice to be recorded to ensure their diction is on point. The app boasts that your child will see progress in just 6 months. The app is backed by University of California Berkeley and the University of Edinburgh. Otsimo Speech Therapy is available for download on IPhone and IPad via the App store. Premium features require a subscription. You can subscribe for $6.99/month, annually at $4.49/month, or lifetime at $115.99. Learn more about how it works on Otsimo's blog.

Speech Blubs Pricing

Speech Blubs and Speech Blubs 2 (the updated version of the original app is available in Apple App store and Google Play)

Speech Blubs comes highly recommended by a wide variety of parenting magazines, speech pathologists, and medical organizations for being fun and effective. Speech Blubs’ dynamic presentation is second to none and worth the subscription tiers of: $14.49 per month, $59.99 for an annual subscription, or $99.99 for a lifetime license. Audio and a dynamic presentation keep your kids engaged while they improve their speech and language skills. A caregiver or parent provides information about the child’s speech therapy needs, including a comprehensive list of diagnoses, noting if they work with a speech pathologist or not, and their level of social engagement. The Speech Blubs app then generates a free personalized report with a full assessment, including tips and tricks on speech and language development. The personalized report informs the words and sounds your child will practice in fun subject areas like animals, shapes, and family fun. Users will also be able to mirror the way the actor on the app’s video moves their lips to speak the words or make other sounds. Children as young as one year of age can start with animal sounds, and then scale up to words and sentences. There are also songs, games, and a section that helps children understand their emotions and how to express them. As a reward, kids can create photos with filters or play games. The filters will have you and your kids entertained for days. Save photos to your photo album and share with your CCA friends!

Speech Blubs 2 Allows Kids 
to see others say words
and sounds

Speech Blubs 2 is the updated version with an expanded offering of videos and enhanced personalization. Kids can see themselves perform in the “videos related to the words and concepts they are learning,” say the Speech Blub developers in the description of this brand new app. 

SmallTalk and Miogym: Speech Apps for motor and mechanic support (Both available through Apple App Store) 

Aphasia Communications has a number of excellent apps to help those kids that have difficulty expressing themselves through speech. SmallTalk Aphasia Female/Male developed by Linographica will help your older child or adult “learn common words and phrases used in everyday situations, like meeting someone for the first time, telephoning someone, or ordering at a restaurant.”

Miogym

There are videos that demonstrate how to move your mouth to make sounds and words. The app also acts as a communication tool. For instance, it can inform people that you have aphasia, survived a stroke, or have trouble speaking. The user need only to hold up the app to share with friends, family, and medical providers. This app opens the world up for those that experience speech delays or have an inability to communicate with spoken words. The app comes in both male and female voice versions. Aphasia communications has a number of other apps to explore and improve the speech motor skills. This app appears to be free, but be aware that could change over time.

Similarly, Miogym helps toddlers and children develop proper motor skills to make sounds and words. The app begins with first sounds, “a collection of exercises that helps children begin to make their first sounds,” say the developers, including animals, trucks, cars, and more. Pronunciation of s,r,l,t sounds are the focus. Understanding and honing the ability to make the mouth move properly accelerates speech development which is the next step your child will take in this application. Children with the diagnoses of autism, apraxia, and dyslexia will benefit from this fun, interactive app that keeps them entertained, rewarded with games, and hooked by “leveling up.” Cute videos of kids performing the activities give your kiddo a training buddy as they learn, holding their attention better than a caregiver or other adult. This app is best for ages 2-7 years of age. A monthly subscription is $6.99, and a lifetime subscription costs $69.99.

A Speech App for Autism: MITA - Mental Imagery Therapy For Autism (Available through Amazon)

Like our bodies, all minds work differently, too. No person hears or interprets the world in the same way. Neurodiversity, as we now name it, contributes to our ability to speak and comprehend language. The MITA (Mental Imagery Therapy For Autism) app developed at Boston University helps synthesize the components that affect the different ways in which your child’s mind is unique. The app has brain games that utilize images, audio, and words to assist in the development of the child’s ability to build sentences to communicate things like “the cup is on the table.” It’s recommended to only have the child do exercises on this app twice a day, once in the morning and again in the evening.

Boston University researcher and app developer, Andrey Vyshedskiy, says more about how the app works in a Boston University The Brink research article, “Prefrontal synthesis is the mechanism that allows you to juxtapose several disparate objects. If I ask you this question, ‘If the lion ate the tiger, which of the animals is still alive?’ you are using prefrontal synthesis to imagine the events and answer that question,” Vyshedskiy says.

Without prefrontal synthesis, understanding complex language is impossible, Vyshedskiy says. Today, almost 70 percent of children diagnosed with ASD struggle with language and up to 40 percent of adults with autism have never gained prefrontal synthesis.

“Whenever language is delayed, when children don’t understand stories or acquire internal language, they don’t develop the deeper brain function of prefrontal synthesis,” Vyshedskiy says. “I realized, there might be a way to get at language development through a ‘back door’ in the brain—we developed this digital therapy app to improve language acquisition.”

These are just a few of the speech apps available in most app stores. There may be others that will suit your child’s needs better. Many have a trial period. Take the time to experiment with different apps to see which ones hold your child’s attention and interest. Everyone's needs are different, be patient and find the right fit so they will commit to a consistent practice schedule. Now go out there and have some fun.

The Person Behind the Mask

By Patricia Simon

Masks help stop the spread of COVID-19 to others. The CDC recommends that people wear masks in public settings, at events and gatherings, and anywhere they will be around other people. Masks protect you and me.

In 1896, Paul Lawrence Dunbar wrote, “We wear the mask that grins and lies. It hides our cheeks and shades our eyes.”

Before COVID-19, we all wore masks in different ways and for different reasons. Now we are wearing masks both literally and figuratively.

A mask creates a whiff of mystery. It’s almost like everything about you is a mystery. Nothing is what it seems. We escape by wearing a mask. It’s a safe haven. It’s a way of hiding your face from society.

It’s difficult to be understood when you talk wearing a mask. Words are all jumbled. For those with a speech impediment or hearing issues, it is very challenging and frustrating.

At home learning has created social and emotional distancing. If you don’t want to be seen or heard, you just log on and become just another student.

Behind every smile there is a story. But, what has been the impact of wearing a mask that covers your smile?

What will the eyes of the innocent child see when the masks are removed? For the person with a craniofacial issue they will now be exposed. People will now see their face.

A mask somehow gives you control over your life. It allows you to decide when to reveal your real face. However, it also signals that you have no control over other people’s reactions. Removing ones mask reveals ones vulnerability. It creates anxiety. Removal of the mask creates surprise, shock, stares.

As the country begins to open up, masks will be coming off. There will be in-person confrontation. We will see an increase in bullying. A mask allows bullies to hide behind a false sense of power.

Children and adults are struggling. We miss the human touch, hugging, playing together, and socializing in person.

This pandemic created a situation that no one could have anticipated. At some point, we will rise above this pandemic. In the interim, we need to be proactive.

Erica Klauber, Executive Director of Children’s Craniofacial Association (CCA) has stated, “It is time that we, both at CCA and as individuals, realize that we can’t just take care of ‘our kids.’ All kids are our kids.’ We are not just serving the craniofacial community; we are starting a revolution of self-acceptance, diversity-awareness, and inclusivity, in students across the country. We are all in this together, and together we rise.”

As leaders in the craniofacial community, we need to come together. We have expertise of specialists from a variety of medical fields.

There are more questions then we have answers. What has been the impact of wearing a mask for over a year? How will we help navigate through these unchartered waters? How do we help the person suffering from depression and isolation?

We need to emphasize that they are not alone. Help is out there.

Now what?

As a community, we can’t work in silos. We need to share information and resources. We need to collaborate.

As the government concentrates on distribution and administration of a vaccine, we need to look at the needs of the community. Now and in the future.

We need to be forward thinking. We need to make sure that parents and educators have the tools to help make this transition easier.

What tools are already available and what tools need to be created?

We have reinforced the concept of being KIND. Now we need to make sure that people know that there is a heart behind the mask. It’s, “We, not me.”


For beautiful eyes, look for the good in others; for beautiful lips, speak only words of kindness; and for poise, walk with the knowledge that you are never alone. -Audrey Hepburn

Patricia Simon R.N., was born in 1961 with a cleft lip and palate and has undergone many surgeries. She has dedicated her life to advocating for those affected by cleft lip and palate. Simon is passionate about educating and helping others to provide quality care to patients affected by clefts and craniofacial differences. She published four books about Simon and his friends. Patricia is a member of the Board of Directors for the Children's Craniofacial Association.   

Seattle Rare Disease Fair and Summit June 4 & 5 *Agenda Inside*

 

Seattle's Rare Disease Fair and Summit is just around the corner.  Scheduled for Friday, June 4th and Saturday, June 5th, this two-day event hopes to educate and inspire clinicians, patients, and families. Medical professionals from Seattle Children's Hospital will share their knowledge and experiences with you virtually. Many thanks to Carolina Sommer of Born A Hero for coordinating this event and sharing this information with us. 

She says, "The Fair and Summit aim to educate, engage, and inspire our community about the importance of rare disease research with the hopes that everyone who comes knows how they can support accelerated research in rare diseases. The finalized agenda is available below. We are so excited!"  

"We have 50 amazing speakers, great roundtables, legislators and lots of resources and actions to take. There will also be door prizes including, gift cards, and 'Be Kind' hats."

To learn more and register (it's FREE) visit www.rarediseasefair.com, or go directly to the registration page here.


On Friday, June 4, you can look forward to learning more about how Born a Hero works with other stakeholders to establish the Northwest Rare Disease Coalition that includes the Rare Disease Advisory Council (RDAC) in Washington state. Carolina says, "We invite you to learn from world famous gene therapy experts, scientists, and leaders in the rare disease space about what ideas we have for the future of the Coalition. We will host a Rare Disease Policy Roundtable with elected officials. Finally, we will feature insightful scientific talks on orthopedic rare diseases."

And that is just day one of this two-day event. 

On Saturday, June 5th, the focus is on community and advocacy. "The Summit, patients, families and advocates will get to know their local rare disease community, learn about what resources are available, and understand how to take action moving forward," states Carolina. 

Review the agenda below, or go to http://www.rarediseasefair.com to learn more and save your spot! 

Born A Hero and our friends in the Pacific Northwest look forward to seeing you there. 

Research Opportunity: Share Your Experience with the Craniofacial Microsomia Team

From CARE Study.com

Editor's Note: Our friends at the CARE team are conducting a study into craniofacial microsomia, which includes facial differences like microtia, hemifacial microsomia, Goldenhar syndrome, and ocular-auricular-vertebral spectrum conditions. Please take the time to read their words below about the study. 

These research studies are a great way to give back to the craniofacial community! The $100 Amazon gift card you receive in return is a wonderful incentive, too. 

The CARE team, comprised of an interdisciplinary group of more than 20 members from 7 countries, recently launched the CARE study (Craniofacial microsomia: Accelerating Research and Education), the main goal of the study is to understand how craniofacial microsomia (including microtia, hemifacial microsomia, Goldenhar syndrome, and oculo-auricular-vertebral spectrum) affects individuals and their families.

We are looking for adolescents and young adults as well as caregivers of children and adolescents to participate in this study. Study participation can be done online and on the phone or video call and includes a medical history interview, providing facial photos, and an open-ended life story interview. Participation will take around 2-3 hours and participants will receive a $100 gift card when completed as a thank you. Please feel free to check out our website to learn more: www.thecarestudy.org