Saturday, September 28, 2019

How Can We #ChooseKind For Those Affected By Facial Differences?

(Editor's Note: Angelica Garcia shared her thoughts with us after reading painful comments written on a local news stations website after the reporting of a murderer with a facial difference. Through her reflection, she asks how can we all choose kind.)

Angelica Garcia 
KUTV 2News’s recent article about a murderer sparked a flood of cruel comments fixated on his bold facial difference. A commenter posted a photo of “Rocky Dennis” from “Mask” & not only did I inform the lady that the movie is based on a real story about a real boy but it is an insult that facial differences are often slapped together with the world of criminals and villains. 
All of this is just HOURS after Marco & I talked to 3 6th grade classes about the value of kindness, beauty in diversity & the education about & humanness of kids & adults with facial differences. 
I’ve been pretty mild about advocacy but now I realize I need to put the pedal to the metal & crank it up higher. The article did not associate villains & horrid criminals with innocent people with craniofacial conditions but the comments were cruel. It makes me think, what if they see a child with a Craniofacial condition? Will they act the same & react in a horrified way? Well, some people already do & that is unfortunate & something I’m hoping to change. Why can’t people be more aware that different is beautiful. 
People, Marco & I talk to schools, youth groups, clubs & any other groups about disabilities, facial differences, the true value of kindness & beauty in diversity FOR FREE & we mostly will do it for free forever to teach people that kids like our late son aren’t monsters, they’re just people, children who are trying to live their life. 
You may think you don’t need to talk to your kids, friends & RELATIVES about this, but it never hurts to talk about it & how YOU know at least 3 people who have facial & physical differences & they are people who are (I HOPE) good people who are just trying to help the world be a kinder place.

What else can we do to make this world a kinder place? 

Friday, September 27, 2019

Attend An Abilities Expo Near You! I Did...Here's What Happened...

A few Sundays ago, I attended the Abilities Expo in Boston, MA. Abilities Expos are hosted across the country in a wide variety of different cities. If there is one near you, and there will be (check this list) I encourage you to go. Once there you can see what your local, and national area companies and nonprofits have to offer people with disabilities, chronic illnesses, and rare diseases. I receive information I did not know I needed. There is so much support out there for all of us. In addition, there is cutting-edge technology and products to support you or your child lives a more enjoyable, productive lives. Here are a few of the companies and organizations that I think we in the CCA community could make the most use of. 

1. M-Brace TacTee

This incredible kit allows people with differently-shaped hands to grasp and hold items like water bottles, markers, pens, knife, fork, and spoon with ease. I really loved the magnetic design and that the various parts were dishwasher safe. The bit that attaches to your hand comes in three sizes, small, medium, and large. It is similar to Eazyhold, another product we have featured on the blog, to make the world a bit more accessible.

2. Low and Go 

This is great for anyone with a wheelchair. These wheelchairs allow you to go onto the beach, gain access to the ground, and lower spaces in the world which you are more likely to encounter in the outdoors. A great option if you or your loved one enjoy nature. I was impressed with the design and durability. 

3. Path International 

Path International is an internatinal organizaiton that provides access to equine therapy and other horse riding. Go to their website to find stables and resources near you. I know many children who enjoy riding, this organization encourages all things equestrian. Reach out to them and get started. 

4. National Ataxia Foundation 

The National Ataxia Foundation is wealth of resource and support about ataxia, or "loss of balance and coordination that is not due to muscle weakness." Loss of coordination can be due to a variety of different neurological and medical conditions. The Foundation is based in Minneapolis and can be useful in getting more information about how to best treat or find providers for ataxia. One common need is for speech or occupational therapy. Parents, guardians, and caretakers may be interested in the the connections these folks could help you make in your neck of the woods. Contact them by phone at (763) 553-0020 or email [email protected]

5. Brilliant K9

If you have a service animal the harnesses built by this company will make them more comfortable. I liked the utility of the harnesses having two side packs for documentation and supplies. These harnesses also allow for one hand operation, too. Learn more at

6. AirBnB 

Everyone knows about AirBnB as they have ben the de facto vacation accommodation option for many of us. Did you know they offer Adapted Experiences, providing its customers access to "unique activities hosted by passionate locals who have included detailed accessibility information to make their travel experience more inclusive for guest with disabilities."* They are based San Francisco. Learn more at 

7. ADAPTS (Emergency sling for emergencies) 

Finally, I really thought this next item is must have for anyone in a wheelchair. ADAPTS is a portable and affordable transfer sling designed to help people with disabilities evacuate planes, trains, cruise ships, and hotel rooms."* This is must have if you or your loved one utilizes a wheelchair. Learn more at 

*Quotations from the exhibitor listings in the Directory and Buyers Guide provided at the Exposition.

Wednesday, September 25, 2019

#ThankfulThursday: Dallas Craniofacial Acceptance Month Picnic 2019

Photo Credit: Brittany Lee

Thank you so much for coming out to the Dallas Craniofacial Acceptance Month 2019 picnic on Saturday, September 14th. Around 150 people came out to gather for a fun day filled with Spring Creek Barbeque, face painting, character visits, crafting up some kindness rocks, and personal portraits painted by a talented artist. The Carrollton Police even stopped by to see what was happening and take pictures with the kids! It was a warm, fun day, and we were so pleased that everyone made our 15th annual picnic a success. 

  Thank you to all of our volunteers and vendors that donated their time to make for a wonderful event. Thank you to our photographers Shannon Reicherts and Brittany Lee for capturing the festivities. 

Photo Credit: Shannon Reicherts

Photo Credit: Shannon Reicherts

Photo Credit: Shannon Reicherts

Photo Credit: Brittany Lee
Photo Credit: Brittany Lee

CCA staff were on hand to with Dallas-Fort Worth area medical professionals, too. Many thanks to the doctors and local, supporting nonprofits that came out to spend some quality time with the families they serve. 

CAM picnics are the backbone of Craniofacial Acceptance Month celebrations. They happen across the country throughout the month of September. There are a few more picnics and gatherings happening this weekend, please check the graphic below or our website to see if there is one in your area. 

Thank you for keeping this 15-year tradition alive. All of our kids know they are not alone, and our parents and caretakers make valuable connections that will last a lifetime. The support we give one another is the greatest gift to give and receive. 

Monday, September 23, 2019

The Mighty #52SmallThings Challenge is Acceptance for #CAM2019

Thursday, September 19, 2019

RESEARCH ROUNDUP: Contribute Your Voice & Experience To These Research Studies

Many researchers across the country are conducting studies to better understand craniofacial conditions. You can help improve the future of medical care for those born with facial differences by sharing your personal experiences. 
There are countless examples of research papers that benefited from participants like YOU! Recently, we covered research that was done at Seattle's Children's Hospital and the University of Washington. Learn more about the positive outcomes you made possible in this CCA Kids Blog post.
You can help provide insight for current studies to pave the way for major breakthroughs in treatment AND to assist medical providers move toward a more patient-centered care approach.
YOUR willingness to participate is one vital way to give back.

Review the links below to see if there is a study that you are eligible for and can contribute your family or personal experience to help brighten the future for those born wth facial differences.


Elizabeth Zielins is a surgery resident doctor at the University of Wisconsin who was born with a cleft lip and palate. She is studying the effects of trauma and possible trends toward PTSD.
She says, "Part of my motivation going into plastic surgery has been to help bring awareness of the difficulties people with facial differences go through to the medical community. One of the ways we are doing this at UW is by conducting research studies."

"One of our studies is looking at whether or not the experiences people with facial differences go through can lead to symptoms of Post-Traumatic Stress Disorder (PTSD). (Traumatic experiences may include both having surgeries/invasive procedures, dealing with day-to-day appearance-based discrimination, and everything in between.) Viewing our experiences through this lens may lead to insights into understanding the long-term effects of having a facial difference."

"To do this, we are conducting an online survey for people with facial differences to fill out. Note: at this time the survey is only for adults 18 years of age or older. If you are interested in participating, please click on the link below to learn more: FILL OUT THE SURVEY

Research study is for Utah families. 
At the University of Utah and Primary Children's Hospital, we are trying to better understand the impact craniofacial abnormalities have on children and families.  This study will help us both understand and measure the many ways this disorder has affected your child and your family. 
If your child has a craniofacial abnormality (CFA), you may qualify to participate in a study.  We are working with families to create a quality of life (QOL) questionnaire.  The CFA quality of life questionnaire will help providers understand how CFA impacts quality of life of families and those who care for young children with CFA. The goal is to give providers better understanding of the impact the disorder has on families’ lives, while also providing a framework for discussing and solving the problems families face.  We hope the development of this instrument will help other families impacted by CFA .

We will be conducting some focus groups during the upcoming CCA Retreat in Salt Lake. We hope you will share your family’s experiences with CFA with us, so that it can be reflected in the instrument we develop.  The survey here will allow you to sign up for a focus group. It also asks for a limited amount of information about you and your child, to allow us to plan the focus groups and analyze the transcripts. All personal information is very carefully protected.
If you have additional questions, you can email our study team at [email protected]. The lead researcher and doctor for this study is Jonathan Skirko, MD
Families and individuals with Pfeiffer Syndrome, Apert Syndrome, Crouzon Syndrome, and Muenke Syndrome are invited to inquire about the reserch being conducted by Dr. Jabs and Carolina Sommer with the Born A Hero, an organization empowering kids born with Pfeiffer Syndrome. 

Genome Alliance 
Genome Alliance hopes to learn more about your understanding of genetic testing and family medical history with their one-minute survey. 
Dr. Drorit Gaines in California is conducting research on the connection between ADHD, Autism and sensory disorders among children born with Apert syndrome. All that is required for this study is an Apert Syndrome diagnosis, copies of your medical records, and the completion of a questionnaire. Click the link above for more information. 


Researchers across three hospitals and universities are studying surgical outcomes of cleft lip patients. The Seattle Children's Hospital, University of Illinois - Chicago (UIC), Shriners Hospitals for Children (Chicago) and the University of Washington have teamed up to learn from patient and their parents about their impressions on change of their infants face after surgical interventions. Study coordinators, Laura Steukle and Solange Mecham describe the process of the study and how you can help in the description below, 

Our study team has spent the last two years interviewing parents and craniofacial providers to create a tool to evaluate interventions and treatments that infants with a cleft lip with or without a cleft palate are going through. Now that this tool has been developed, we are looking to validate the questionnaire. To do this, we are asking parents of young babies and young children with a diagnosis of cleft lip with or without cleft palate to complete the iCOO questionnaire a few days in a row at the following times 1) before surgery 2) 2 days after lip surgery and 3) 2 months after lip surgery.  As our way of saying thank you, we are giving parents $5 a day each day they complete the iCOO with a bonus $25 for each complete series, for a total of up to $160 for their time and effort. We are inviting up to two caregivers in the home to participate. Our goal is that this tool will help clinicians and researchers better understand how these interventions are affecting the whole health and well-being of infants and young children with the hope that this understanding will improve future cleft care.


In the past two years, we at Baylor College of Medicine and Texas Children's Hospital have begun a genetic research program to look for the genetic cause(s) of Goldenhar Syndrome (also variously called Hemifacial Microsomia and Facio-Auriculo-Vertebral Spectrum). You may be aware that very little is known about the genetic explanation for these rare disorders, despite their variable effects on the eye, the ear, the face, the limbs and skeleton, and occasionally the kidney, among others. Also, these conditions vary widely from one family to another, so we expect that there is more than one genetic explanation for the same "diagnosis”, thus making the task of unraveling the true explanation(s) in any one family considerably more challenging! Many families have already had conventional genetic testing, which usually yields almost no useful information.

As part of The Center for Mendelian Genomics at Baylor College of Medicine, I am pursuing the genetic explanation(s) for the Goldenhar Syndrome and related conditions.

Since you as parents have an essential role in caring for, monitoring, and guiding the education of these children and young adults, I would appreciate most sincerely your joining us in this effort. Without your dedication and willingness, we cannot achieve the understanding that both the families and many scientists and physicians have wondered about for decades! There is no cost to any family for the detailed genetic analyses that will be done.

If you are interested in helping your child and in joining this research program, please contact me. Nothing of this scale has ever been done for this spectrum of disorders.

Please call my academic office at (713) 798-3030 or email me at [email protected]. 

If I am not in the office, please leave a voice mail with your name and a phone number for me to return your call. Also, please mention Goldenhar Syndrome or Hemifacial Microsomia in the message. I will call back and explain the details!

Thank you! Our team here is most eager to proceed with this unique and exceptionally important research program!

Richard Alan Lewis, M.D., M.S. Professor, Departments of Molecular and Human Genetics, Ophthalmology, Medicine, and Pediatrics, Baylor College of Medicine and Texas Children's Hospital

The overall goal of this project is to connect rare and undiagnosed families directly with genomic researchers to discover all of the genes that cause rare craniofacial diseases, and use this information to increase the rate of rare craniofacial disease diagnosis. 
Participants will complete an online form about their family and childhood onset rare and genetically undiagnosed craniofacial condition. From there, a member of our study team will set up a live video conference with the family to explain this research study and make sure that all of their questions are answered. With permission, we’ll reach out to the patient’s doctors directly to collect a copy of their medical records. Then, we’ll mail a sample collection kit directly to their house. Upon returning the kit to The Broad Institute of MIT and Harvard, samples will be registered in our tracking system and DNA will be processed for exome or genome sequencing. We will then begin analyzing data, comparing it to healthy individuals and identify which mutations in the genome are common, and which are rare and potentially related to their craniofacial condition. If we find results that explain the underlying cause of the rare condition present, we will request a second sample that will be sent to the Partner’s Laboratory for Molecular Medicine (LMM) in Cambridge, MA and will be confirmed in their clinical lab. LMM will provide a clinical report explaining the genetic findings, and these results will be shared with you and your local doctor. Click the link above for more information. 

Wednesday, September 18, 2019

#ThankfulThursday: Links of Love Benefits CCA Kids Thanks To Big Sponsors, Raffle

CCA had a wonderful turnout for its annual Links of Love tournament hosted this year at Top Golf Park Lane last Thursday, September 12th. 

Many gathered, golfed in groups, and enjoyed snacks. Others mingled while meeting other CCA families, while perusing the large raffle packages during this fabulous, friend and fund raising event. 

CCA Staffers showcase the extensive collection
of raffle baskets.
We could not be more grateful for our loyal Links of Love sponsors, Team Impact (Tommy Reeves, of Texas, and Tom Reeves, of California) and Team Hickerson,  from Hickerson Mechanical, who come back year after year to this signature event to benefit CCA Kids. In addition to their support, we also had Board Member, Steven Weiss and his wife, Petty, raise over $5,000 for our kids. Thank you for all your hard work.

Our generous donors and sponsors helped three families take part in the days events. Our raffle packages are always impressive thanks to donations collected and made towards our extravagant raffle packages. Many thanks to Karen Allbritton and Brad Boatner. This family found and helped get items donated for these fully-stocked raffle baskets. 

Thank you to our raffle donors including: Grimaldi’s Pizza, Pie Tap, Asian Mint, Meso Mayo, Village Burger Bar, In and Out Burger, Raising Canes, Fleming’s, Hard Eight BBQ, Whataburger, Cheddars, Red Lobster, Buffalo Wild Wings,  Gaylord Texan, Medieval Times, Alamo Draft House, Toys Unique, International Scuba, Castle Hills Taekwondo America, Fossil, Belk’s, Lily Pulitzer, Diptiques, Kendra Scott, Alex and Ani, St. Bernard’s Sports, Nixon golf, Trader Joes, Western Sons Vodka, The Peace Family and the Andler Family.

Steven Weiss with local, CCA Dallas friends Michael Brown
Brittany Brown, and Allison

Finally, no CCA event would be complete without a fine photographer contributing their talents to help us document the day of fun and fundraising.  Chirrisse Owens you did a fantastic job making sure to capture the evening in the best possible light. 

Thank you to everyone for making it a very special day for CCA!