Monday, September 16, 2019

Survey Needs Participants To Learn About PTSD

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:

30 Stories 30 Faces 30 Years: Priscilla Perla

CCA is a wonderful family! As a child growing up differently knowing there are others like me is comforting. The meetings and picnics we attend also make my mom feel better, too. She is not the only parent who has to go through this. Plus everyone is so nice to all of us it makes us feel welcome. We appreciated the recommended doctors and medical staff, without them we wouldn't get the correct guidance we needed. Thank you all!

                                                                                      Priscilla Perla, CCA Teen

Priscilla Perla lives with her family in sunny La Jolla, California. She will attend La Jolla High School in the Fall as a Freshman. Priscilla enjoys all types of movement and dancing. She expresses her emotions and strong, self-image through jazz, ballet, tap, hip hop, and modern dance. Thanks to San Diego-area Make-A-Wish Foundation, Priscilla was able to meet her idol, Selena Gomez. As a family, the Perlas enjoy going to the movies, trying new foods at local restaurants, and indulging in the occasional ice cream cone. Relaxing and spending quality time together is very important to this family. Priscilla is grateful for this family time. She reflects, “I want to be grateful for what I have, like my family.”

Even with a grateful heart and strong family bond, Priscilla was not immune to the poor self-esteem that comes after being bullied. Today, she is more confident than ever and able to accept that she looks different. Priscilla believes she and other human beings deserve respect. Her advice for our kids, “Be yourself, no matter what you look like, you’re just like any other kid.” Through the vehicle of social media, Priscilla shares positive images and messages with the hashtags “#StopBullying, #CleftPalate, #Tracheostomy, and other self-affirming words. She hopes to continue to encourage kids with facial differences to stand up for themselves as they make their way into their bright and bold future.

Tuesday, September 10, 2019

States Declare September Craniofacial Acceptance Month

Our most recent initiative to reach more people during this month of acceptance and awareness included inviting states to sign proclamations stating that September is Craniofacial Acceptance Month. Many states responded with enthusiasm, including Utah, Hawaii, Colorado, New Jersey, South Dakota, and many more. To see if your state recognized September as Craniofacial Acceptance Month, check our website.  

While you are there, you can also read the proclamation signed by state governors. We want to thank all of those who have participated in this latest push for additional acceptance. It means so much to have our elected politicians and government officials behind us in the fight for equality.  

Friday, September 6, 2019

30 Stories 30 Faces 30 Years: Grandparents Day Edition

When we are looking for unconditional love, many look no further than their grandparents. These amazing family members dole out tons of ice cream or the best mashed potatoes, always have a special...mischievous... story to share about your mom or dad as a child, and some will even let you ride the dog around the living room. Their hearts are so filled with love and pride, grandparents just can’t say “No.” 

Thanks to National Grandparents day, we get to celebrate all of our CCA grandmas and grandpas (and Gigis and PopPops, Nanas and Opas, too!). We felt that the Lances and Laugharns, grandparents to Shierry Laugharn, exemplify that unconditional love that all CCA grandparents feel for their CCA kids. 
Tim (Gaga) Lance

These two sets of grandparents create a double duo of love for their CCA kid. They work together to make Shierry’s journey a celebration whenever given the chance, and support their own children to be amazing parents to boot! Both sets of grandparents gather together for a special family tradition in honor of Shierry, “Before each of Shierry's surgeries, no matter how minor, the grandparents get together with Shierry, Rachel, and Dan for a pre-op pizza party.  It is a tradition we all hold very dear,” says Tami Laugharn. 

How amazing is that?! 

Rachel, Shierry’s Mom, speaks volumes of the support her and Dan’s parents provide, “Shierry has had a four-person, full-time cheering squad since the moment she was born. Every new thing my husband and I have to learn, they’ve stepped up to learn too, whether it be feeding her as a baby with her special bottle, or putting in her prosthetic eye. They love to hear about every goofy detail of her day. She has never felt anything other than pure love and care from her grandparents and is one of the luckiest little kids in the world.”

Shierry, Dan, and Rachel live in Austin, Texas. They love dancing, playing in “Invisible World,” to expand their imaginations, and going to the park to enjoy the playground and grass. 

Jan (Yaya) Lance
Rachel’s parents, Jan (Yaya), and Tim (Gaga) live in Austin, too. They love the Texas Longhorns sports teams, hiking, and volunteering in the community. Yaya Jan says, “CCA has provided Rachel and Dan with opportunities to learn from and form relationships with other parents who deal with extraordinary circumstances on a daily basis. They’ve grown with the experience, so that now they can be a source of knowledge and support for others. Rachel, Dan, and Shierry look forward to meeting up with old and new friends at the Retreat each year.”

Jan is always jazzed about our Annual Family Retreat, too, “we loved seeing photos of Shierry with her new (and hopefully lifelong) friends at the 2019 Retreat. They were inseparable! We can’t WAIT to see y’all next summer when the Retreat comes to Austin, our hometown.”
And we can’t wait for Austin either, Jan. 

Gary (Grandpa), Tami (Game), and Shierry
Dan’s parents, Tami, (Gami), and Gary (Grandpa), live in The Woodlands. While they love traveling and are dedicated to their church, they are even more devoted to their granddaughter. Family is first, which is evidenced in one of the photos that Tami shared with four generations of Laugharns pictured. So tight is the lineage that Shierry was named for her great-grandfather, Edward Shierry, who sadly passed away last month. 

Shierry and her Great Grandfather Edward Shierry for
whom she is named.

Tami echoes the sentiments shared by Jan about the impact CCA has had on their family. “CCA has given our families the support they needed.  Rachel being able to reach out to people who have gone through similar situations is so wonderful. You know you aren't alone.”

She further illustrates the meaningful, active network of CCA parents by telling this story, “For example, I remember her (Rachel) having a hard time finding an eye ointment that worked well for Shierry. Someone from the East Coast sent her a box full when she found it. Just knowing that others have gone before you, and can give you advice, love, and care is special.” 

Both the Lances and the Laugharns agree with one more thing Tami mentioned during our conversation, “we are blessed to have this super girl as our granddaughter.”

Indeed, we all are blessed to have you and Shierry part of the CCA community. Thank you for helping her be the “super girl” that she is. 
Grandpa Laugharn and Shierry
Happy Grandparents' Day! If you are lucky enough to have your Nanny or Grampy around: call them, give them a hug, and thank them for their enduring love.

#CAM2019 Press Release - You Distribute! You Raise Awareness!

Please share this press release with your local media to help spread the world about Craniofacial Acceptance Month. Download it here from Google Drive. Share it with your local TV news, newspapers, and other media outlets. Hopefully this will help you get in front of the cameras or reporters to share your story, and widen the circle of acceptance for those affected by facial differences.