Sunday, January 12, 2020

Houston-Area Moebius Syndrome Awareness Gathering Jan 18


Our own Haley Streff, geneticist, and member of the CCA board of directors, will be taking part in the panel at the Moebius Syndrome Foundation's Houston, Texas-based event on January 18th from 1:00PM- 5:00PM. There will be time for education and exchange of information, as well as, time for fun. Bring your favorite snacks or dish, enjoy games, and some door prizes. This will be the sixth year running that the Houston-area group gathers.


Sixth Annual Houston-area Moebius Syndrome Awareness Day Event
Date:  Saturday, January 18, 2020, 1:00 pm to 5:00 pm
Location:  St. Theresa's Catholic Church, 6622 Haskell St., Houston  77007
  • Refreshments will be served
  • Attendees are encouraged to bring beverages, side dishes and/or desserts to share
  • Toys and games will be available for children
  • Professionals will be available to meet attendees and answer questions
  • Door prizes to be given out
To RSVP or ask questions, email Roland Bienvenu at hrkingfish@aol.com or Larry Garza at lauroantoniogarza@yahoo.com

Thursday, January 9, 2020

An Open Letter to Wendy Williams

This week, we heard of an episode of the Wendy Williams show that aired on January 7, 2020, that disparaged facial differences, specifically Joaquin Phoenix, who has was born with a microform cleft.

After the show aired, the online community of adults with facial differences rallied against Ms. Williams' mocking behavior. At CCA, we were dismayed to once again see negative portrayals of people with facial differences in the media. Thus, we've issued this letter. Please feel free to share your comments with the show at: comments@wendyshow.net



January 8, 2020

Thank you for taking the time to read this message from Children’s Craniofacial Association regarding your January 7, 2020, broadcast. We were upset and saddened to hear your words and see your actions in describing acclaimed actor, Joaquin Phoenix. You stated he had a “hairline fracture - what is it called?,” after nearly calling it a “harelip” (a derogatory term) to get a laugh out of your audience.


While we want to note, you were certainly praising his looks, you did use the phrase “oddly attractive.” All together, this could have been an amazing moment for people with facial differences - you on your platform, praising someone with a facial difference - but your actions of tugging at your lip for an extended time actually brought back memories for many of us of our days on the playground when our classmates would chase us around pulling at their own lips or tugging at their eyes or puffing up their chins, to highlight our own physical differences. Once again, we felt that we (people with facial differences) could not simply be seen or accepted or praised for who we are - no matter how large the accomplishment being discussed - No! Once again, we were reduced to having our facial difference become the only thing worth talking about.

 On average, children born with craniofacial conditions have from ten to twenty surgeries in their lifetimes to manage their conditions. Some are to help us hear, eat, see, breathe, and speak. Others are to repair and restore the features to a more “usual appearance.” But what hurts more than the countless IV sticks and the long nights spent in hospital recovery are the mental health issues, such as depression, anxiety, and post-traumatic stress disorder after years of bullying, scary encounters in medical settings, and people mocking our looks.

With these factors in mind, we hope you will think twice before using this type of humor again. 

Please reach out if you would like to learn more about craniofacial conditions like cleft lip and palate. We have many speakers who would love to share their stories on a platform as large as yours, and we also have syndrome booklets and completely free resources for teachers that we distribute.

Thank you so much for your consideration,





Erica Mossholder, MBA
Executive Director

Moebius Syndrome Awareness Day Is January 24th







We are enthused to be raising awareness about Moebius syndrome this January with the Many Faces of Moebius Syndrome, the Moebius Syndrome Foundation, and the Moebius Syndrome Research Trust, three organizations that care deeply about this rare, craniofacial condition. We hope through our joint effort that more people worldwide will be informed about Moebius syndrome, and that those who live with it will feel even more supported. Please remember to wear purple on January 24th, Moebius Syndrome Awareness Day. Keep an eye on the CCA Facebook page for #MoebiusMonday posts and other related content in the weeks leading up to January 24th. Below you will find a press release with more information about our worldwide awareness efforts.

The Many Faces Of Moebius Syndrome (www.manyfacesofmoebiussyndrome.org), the Moebius Syndrome Foundation (www.moebiussyndrome.org), the Moebius Syndrome Research Trust (www.moebiusresearchtrust.org), and Children’s Craniofacial Association (www.ccakids.org) are proud to announce the 10th annual Moebius Syndrome Awareness Day which will be celebrated worldwide on Friday, the 24th of January, 2020. 
Moebius syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. Most people with Moebius syndrome are born with complete facial paralysis and cannot close their eyes or show facial expressions. Limb and chest wall abnormalities often occur with the syndrome. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders and weak upper body strength may also be present. 
It is estimated that there are between 10,000 to 25,000 cases of Moebius syndrome worldwide. 
In past years, Moebius Syndrome Awareness Day has been a resounding success and saw participation from every continent on the planet – the main focus of the day is to create awareness. MSAD events have taken place around the globe in homes, schools, churches, workplaces, auditoriums, and outdoors. Dozens of news stories have hit the headlines, wound up on the airwaves, and blasted off into cyberspace via various print, TV, radio and social media news publications! 
Family, and the importance thereof, in the lives of individuals who have Moebius syndrome is the focus of this year's Awareness Day. "It is a tribute to the many families around the world who are often the unsung heroes of our lives" says Tim Smith, President of the Many Faces of Moebius Syndrome, who himself has the condition. 
"There is no substitute for a loving, supportive family whether that family is biological, or our worldwide Moebius family. Knowing someone is there to support and fight for you when the going gets tough makes living with Moebius syndrome a little easier,” says Vicki McCarrell, former President of the Moebius Syndrome Foundation. 
Moebius Syndrome Awareness Day is held annually on the 24th of January, the birth date of Professor Paul Julius Moebius, the doctor who first diagnosed the disorder in 1888. 
Please join the Global Moebius syndrome community and take part in one of the many family gatherings taking place on January 24, 2020. We encourage you to proudly wear purple and do some of your own research to educate yourself and others about Moebius syndrome. We appreciate your support and look forward to the biggest Moebius Syndrome Awareness day ever!

***
And Houston area friends, join this event:
Sixth Annual Houston-area Moebius Syndrome Awareness Day Event
Date:  Saturday, January 18, 2020, 1:00 pm to 5:00 pm
Location:  St. Theresa's Catholic Church, 6622 Haskell St., Houston  77007
  • Refreshments will be served
  • Attendees are encouraged to bring beverages, side dishes and/or desserts to share
  • Toys and games will be available for children
  • Professionals will be available to meet attendees and answer questions
  • Door prizes to be given out

To RSVP or ask questions, email Roland Bienvenu at hrkingfish@aol.com or Larry Garza at lauroantoniogarza@yahoo.com

Sunday, January 5, 2020

Mini-Retreat In St. Pete, Saturday, January 18th, 1PM-4PM



Join us for our first Mini Retreat on Saturday, January 18th from 1:00PM-4:00PM at the St. Petersburg Country Club 2000 Country Club Way, St. Petersburg, FL. We will convene together in community after we attend the Florida Cleft Palate Craniofacial Association educational symposium at All Children's Hospital from 8:00AM to 12:00PM. Topics to be covered during the educational portion of the day include IEPs, sleep apnea, and treatments for craniosynostosis and craniofacial conditions. In the afternoon, CCA will take over with a festive dance party, barbecue lunch, games, and more. Meet new friends, so you can build bonds that last a lifetime. 

If you live or plan on traveling to Florida during the long weekend, please contact Annie Reeves, Programs Director at areeves@ccakids.com to register and receive additional information. 

Wednesday, December 25, 2019

And Visions of Sugar Plumbs Danced In Their Heads...Many Thanks To Gingertown



The sights and sounds of the season never looked so tasty. The Gingertown tradition continued at Dallas' North Park Center
benefitting CCA again this year. This December the contractors, architecture firms, and urban planners all came together to build a town made of gingerbread, candy, and other edible delights. Even some of our local dallas-based families were part of the fun. They built alongside local professionals, creating trees, houses, and other elements of the town.  

Every company or firm that took part in this year's festivities received an apron complete with CCA and Gingertown logo. This year's theme was Venice. Many of the buildings and towns looked like those found in the Northern Italian city. 


On December 10th, Jono Lancaster, friend of CCA and motivational speaker, made his second consecutive appearance at Gingertown. He spoke about kindness and acceptance to the gathered crowd of builders, shoppers, and CCA friends. 

We are so grateful to Nancy Nasher, President and co-owner of NorthPark Center, for her continued support of CCA. Also, we are grateful benefit from all of the local businesses and companies that make Gingertown come to life every year.