Tuesday, January 28, 2020

I Am Limitless by David Garcia

David Garcia 
By David Garcia

Hello! My name is David Garcia. I am a Colombian-American sixth year chemistry PhD student at Brown University. I am set to defend my thesis this upcoming April and graduate in May. I was born with Moebius syndrome with defects to my abducens nerve limiting the peripheral movement of my eyes. I was also born with partial hands and no feet. As you know too well, it doesn't end here and soon I will face the real world. While my intention was to pursue a job in biotech, this summer I had a life-changing experience during a trip to Paris. 

I had always dreamed of going to Paris, and this summer, my dream came to fruition. I was ready to experience many memorable events like eating delicious food, tasting exquisite wine, and seeing beautiful world landmarks. What I didn’t expect was for a few French words to change the trajectory of my life. It all occurred at a very unlikely place, the Champs Elysee metro stop. Heatheran, my close friend and agent, and I had arrived at our stop. We stepped out of the train and began walking toward the exit. As we were exiting, I noticed a mother and her son walking toward us. After taking a closer look, I realized that the boy had a debilitating limp that made it difficult to walk. “You are not alone,” I thought to myself. Difficulty walking was something I was very familiar with. I greeted them with a smile and said, “Bonjour”. The mother responded, “Bonjour.” The boy looked up but quickly and shyly looked away. As I passed them, I heard his mother say in French, “Did you see that guy? Did you see his hands? He has a disability just like you, and he looked so confident and happy.” Initially, I didn’t think too hard about what she said, but then my mind started to run and it hit me. For the majority of my life I felt like I was constantly battling the world. It was David versus the preconceptions of society. I felt an insatiable desire to prove to everyone that I was capable of anything. I felt confused not seeing any disabled people in positions of success. I felt aimless without a disabled role model to look up to. I felt isolated in the struggle against Moebius syndrome.

I often remember the exchange I had with the mother and her son by the metro... I remember the mother’s smile. I remember her son’s low self-esteem, timidity, and uncertainty. I was that boy twenty years ago. Since then, I have learned from my experiences which enable me to place trust in myself and my vision. A vision designed to defy and shatter all societal preconceptions of people with disabilities. I now know what I am destined to do in this world and my purpose in life...

It is to share my successes and struggles.
It is to motivate people to be relentless in the pursuit of their dreams.
It is to inspire those who were told they can’t be great.
It is to be limitless.    

As such, I have decided to pursue a career as a motivational speaker, model, and ambassador for people with disabilities. To begin, I grouped a team of my closest friends at Brown University in Providence, Rhode Island, and founded David Garcia Limitless (DGL) on June 28, 2019. On October 26th of the same year, I held a small event at Brown and launched DGL. At the launch, I screened a video that my team and I made to get my story out there. The following day, I released the video on social media platforms Facebook, Instagram and Youtube. I encourage you to watch the video below.

If you would like to contact me with any feedback or questions, send me a message on my social media accounts. Search for and like David Garcia Limitless on Facebook, Instagram, and YoutubeThank you all for taking the time to read my story. 

Monday, January 27, 2020

#ThankfulThursday: Mini Retreat in St. Pete

Mr. Tommy and CCA Kids
Photo Credit: Rebecca Seda
CCA enjoyed a phenomenal time in St. Petersburg, Florida hosting our first Mini Retreat after the Florida Cleft Palate-Craniofacial Association's annual meeting where they hosted an educational symposium for families at All Children's Hospital. Interested parents, caregivers, physicians, and adults attended informative sessions on Obstructive Sleep Apnea, IEPs, Minimally Invasive Craniosynostosis Surgeries, and Distraction Devices provided by All Children's medical professionals. We want to thank Drs. Bobbi Jo Hopkins, Alyssa Fritz, Gerald Tuite, and Alex Rottgers for their excellent, well prepared talks. Also, Dr. Alexander Allori gave a keynote for everyone in attendance on Measuring Outcomes in Cleft Lip and Palate Treatment. This type of opportunity to learn and gain knowledge of developing craniofacial treatments is incredibly beneficial to families who want to stay informed. The research and effort our providers put into their work is truly amazing, and it is such a gift to hear them talk passionately about improving care for our kids.

Kristin Bartzokis, Speaker

After this educational opportunity, families then were able to make a short drive to the St. Petersburg Country Club, where a delicious cookout lunch was served. The staff there went above and beyond, and a huge thanks to the Pokorny family and manager, Joe Brooks, who made this space available and so welcoming to us!

We all enjoyed the awesome entertainment from Mr. Tommy's Musical Show For Kids! Mr. Tommy made the show interactive bringing about the festive feeling of our Annual Retreat's dinner dance, along with his friend the stilt walker and circus performer!  In attendance were CCA staffers, Erica Mossholder, Executive Director, and Program Director, Annie Reeves, to ensure everyone enjoyed a fun afternoon meeting other regional families.

We even had a fun raffle for our kids. Raffle items included a women's basket, a CCA Swag set, and the most coveted, a Kindle Fire from Every Smile Has a Story!

CCA would like to thank Tampa-area photographer, Rebecca Seda. She truly did a phenomenal job and provided a labor of love. Shot after shot are all magnificent! Thank you for volunteering your time to CCA on Saturday for our mini retreat. All of the photos here were taken while volunteering her skills at this regional event! Thank you, Rebecca.
The Brown Family

#ChooseKind CCA-themed Raffle Package

The Loeffler Family

Dunia the Cutest
The Beliveu Famiy

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 [email protected] or Larry Garza at [email protected]

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: [email protected]

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 [email protected] or Larry Garza at [email protected]

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 [email protected] to register and receive additional information.