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. 



#WonderWednesday: Jono and CCA Staff Visit J.C. Austin Elementary School

On Monday, December 9, the CCA Staff along with Jono Lancaster visited Lilianna, Abigail, and Joseph Hernandez's school, JC Austin Elementary School in Mesquite, TX. We were escorted by the Assistant Principal, Ms. Jane Freeman and Brie Hernandez, CCA Mom, who was a wonderful advocate making this visit possible! 

Our time at the truly kind and welcoming Austin Elementary was amazing. Three grades (3rd-5th) of 215 students sat rapt with attention for over 50 minutes in assembly - a huge accomplishment in itself, as Jono told his story of growing up hating the way he looked, with bold truth and quite a bit of humor, too. He encouraged them with three stories of people who made an impact on him as a young man - three people who saw him for who he was and made positive comments about his face. He challenged the students that they could be any of those three people to someone - and they may never even know it. The power lies in telling others what you find amazing, special, beautiful and unique about them. They can change someone's whole life with a kind word or a friendly listen.

Then, in the classrooms, the students proved how attentive they actually were, asking follow up questions with incredible detail, heart, and depth. Jono patiently answered them all and encouraged them to speak up and talk to trusted people (teachers, parents, and friends) when things are hard. Bringing the pain to the surface and talking about it is healing; bottling it up inside hurts both the person with the pain and the others who are trying to help them. 

After all the questions were asked, all the classrooms were visited, and all the favorites were compared (what's your favorite food... color... place to go... sport... video game...), Jono left but not before he gave out his own homework assignment!  He told the students that they needed to think of one thing that they are scared to say out loud and to write that down. After taking some time to really think about it, he encouraged them to share it with someone they trusted. The second assignment was to write down something they truly love about themselves and to put that in a special place - a bathroom mirror, a bedroom wall, or maybe their desk, and to look it at daily to remind themselves how special they are to this world!

Sunday, December 22, 2019

30 Stories 30 Faces 30 Years: The Wojtyniak Family




When you have a child born with a craniofacial difference, there are so many questions and feelings that you are faced with. CCA provided me with not only information but a sense of family and community. I believe wholeheartedly in the mission of CCA and have chosen to support this organization as much as I can. My appreciation runs very deep. My family has grown close and developed strong relationships with other families who have had similar experiences that we would not have known if it weren’t for CCA.  Thank you, CCA for all you do for so many!

-Angela Wojtyniak, CCA Mother 

L-R Brent, Colton, Brooklyn, Angela

We are very grateful to have Brooklyn and her mom and dad, Angela and Brent, as part of our CCA family. In the short time that they have been members of our community, they have had a tremendous impact. In 2012, months after the birth of their first child, Brooklyn, Angela and Brent sought us out on Facebook, while researching everything they could about Crouzon syndrome. The family benefitted from all of our virtual and in person love from the very beginning, all the while giving back where they could to the community that gave them so much. Then in the Fall 2018, the Wojtyniak's hosted the first Spreading the Love for CCA...it's the Brooklyn Way Golf Tournament in Livonia, Michigan. The fundraiser brought in over $17,000 for our kids. Then in 2019, the Wojtyniaks blew us all away with a second round of their golf tournament. This time it raised more than $20,000! More importantly the entire Livonia, Michigan community embraced the family's efforts. Local businesses and stores contributed gift baskets for raffle items or sponsored one of the 18 holes on the golf course. Regional CCA families came together for the day, too, strengthening connections, building bonds of acceptance, and leaving with the reassurance that they were not alone.
The Wojtyniak Family

Proud of her community, Angela says, “It was important to us to raise our children in the community we were raised, with our families close by.” Brent and Angela were born and raised in the Metro Detroit area. Brent earned his Bachelor’s degree from Michigan State University in Turf Management. He is the operating manager for Green Arbor Supply, which is a fertilizer company.  Angela has a degree in Psychology from Western Michigan University as well as her Masters in Counseling from Oakland University. Angela has worked for the Livonia Public Schools for 13 years. During the last nine years, she served as school counselor at Stevenson High School, a role she very much enjoys. Their daughter, Brooklyn is seven and attends first grade at Buchanan Elementary School. Brooklyn was born with Crouzon syndrome and hydrocephalus. She’s had over 20 surgeries. Angela affirms that "none of them have slowed her down. She is full of energy, absolutely hilarious and brightens every room she steps into. She recently started tap dance classes and loves it!" Brooklyn's brother, Colton, is the family's "little Bubba man." Mom says, "He has more energy than all of us. Coltie completed our family and is an absolute joy. He loves all things automotive, including trucks, cars, ambulances, and diggers. You name it, he is captivated by it." Despite living in chilly Michigan, the whole family enjoys the summer best when they have the opportunity to take daily swims in their pool.

Sassy Brooklyn!

Wojtyniak family, thank you for being part of our fold. We look forward to all the joy your family brings to ours in the years to come. Keep raising awareness and love for CCA in the ways that you know best.




Sweet Brooklyn!







CCA Celebrates Holidays With Sounds of The Season At Dallas Symphony




The inaugural C-Suite Christmas on December 11, 2019, at the DSO was a magical event! The event celebrated one of Dallas's most amazing qualities: Partnerships between business and the arts. Seven CEOs came together and each selected a special nonprofit to attend this event. Nancy Nasher, Owner and President of NorthPark Center, chose CCA and 67 CCA members signed up for complimentary tickets to the event. Dressed in our best, we made our way to the Morton H. Meyerson Symphony Center where we had a pre-concert reception with refreshments and cookie decorating. We had time for our families to mingle and then we made our way to the hall and heard all of our favorite Christmas songs - punctuated by performances from the special CEOs themselves! Who knew about their hidden talents?! We were especially impressed with Ms. Nasher's performance as guest conductor for the holiday favorite "Sleigh Ride!" The magical evening was capped off when Santa came out into the audience and we all sang a silly version of the Twelve Days of Christmas, featuring very brave audience members and a delightful snow fall from the symphony hall rafters. Then we were sent on our way into the chilly, Dallas evening with warm hearts, full of the holiday spirit. 

Michael Brown
Coming together as a CCA family is a very special and treasured part of our community. We are so grateful to the families who joined us: the Jacksons, the Alveys, the Browns, the Rantras, the Greers, the Carlisles, the Kimberlins, the Hernandezes, the Andlers, Jono Lancaster, and Erica Mossholder, the Johnson family Greg, the Landeros family Jennifer & Jaden and the Owen family

The Kimberlins with Jono Lancaster
Thank you to the families who joined us and especially to the incredibly generous Nancy Nasher and NorthPark Center family who made this past week a true celebration of the season with their incredible hospitality and generosity. We also appreciate the Kim Noltemy, Ross Perot President & CEO of the Dallas Symphony Association, the amazing performers and supporters of the DSO and conductor Lawrence Loh, the generous sponsors who contributed so generously to the event's fundraising, and the inaugural class of executives who came together to make this evening so special and successful for DFW organizations and the arts. Merry Christmas! 
Michael Brown and Chloe Andler, Assistant
Director of Development and Joy

Dallas Symphony Orchestra Stage

Monday, December 16, 2019

30 Stories 30 Faces 30 Years: Frederick and Sabrina Seitz






We've all heard the expression – "Sometimes what you're looking for is already right in front of you." Little did I know that I would find my soulmate through CCA. 

I had always known who Freddie was, I would see him around at the CCA retreats but we never interacted. That was until, the dinner and dance in 2014. I will never forget when the slow song came on, Freddie walked up and put his hands out towards me. I smiled and nodded, accepting his invitation to dance. From that moment, our friendship began. Never did we imagine that 5 years later, we would have another first slow dance... as husband and wife. We are truly grateful for CCA for providing us the opportunity to meet others who were born like us, to form special bonds with families and for helping us find everlasting love.                                                 

-- Frederick and Sabrina Seitz, CCA Adults

CCA works hard to bring families, children, and individuals with facial differences together so no one ever has to feel alone. That said, we never could have imagined that two, wonderful people from two different countries, would fall in love and get married. This exceeds all of our expectations. We must be doing something very right. It is an honor to celebrate the love story that is Fred and Sabrina’s.

Fred and Sabrina have known each since 2005, the year Sabrina attended her first Annual Retreat. They would talk from time to time, but clearly it was not until 2014 that their friendship tranformed into something more.

Fred is originally from Poland, Ohio. He was born with born with Goldenhar syndrome (hemifacial microsomia), but does not let that define him. He recently moved to Bloomington, Indiana after accepting a position working with the United States government as a systems engineer. He enjoys video games and is a self described aviation enthusiast.


Sabrina, from Gatineau, Quebec, joined him in Bloomington, shortly after they were married in August 2019. She was born with Pfeiffer syndrome. Sabrina is working on getting her citizenship so she can begin working in the United States. For now, she volunteers working in education with kids from pre-kindergarten to sixth grade. She enjoys going to the gym and other forms of self improvement, like writing and reading. Together, they enjoy spending time together with their cats, hiking nearby trails, and traveling, a hobby they embraced as many others do through CCA’s many Annual Family Retreats located in a different city each summer.

Being born with a facial difference has affected each of them differently. Sabrina says, she felt very alone and that CCA put an

end to that feeling soon after attending her first retreat, “I thought I was the only one who was born like this. I had never seen anyone else around me with a facial difference. I didn't find CCA until I was 16 years old and that's when I finally met others with Pfeiffer Syndrome. My 1st CCA retreat in 2005 opened a whole new world for me. It was the best feeling to meet others who looked like me and had been through the same things I have.” It has not been an easy road and has taken its emotional and mental toll. Still, Sabrina keeps her chin up saying, “Aside from the many surgeries and medical procedures, there have been social and emotional challenges as well. I have been judged by others, talked down to and discriminated against. On the other hand, being born like this inspires me to educate others about facial differences and to help spread the message that we should all be more kind and accepting of one another, regardless of how we look on the outside. Overtime, with the love, support and encouragement from my mom, I have learned to embrace my differences. I believe we are all unique in our own way.

In contrast to Sabrina’s many years before finding CCA, Fred began attending Annual Retreats from a very early age. He says, “I attended my first retreat when I was 3 years old. I was very

fortunate to grow up with the organization from the beginning as it has helped me form a deeper perspective than most kids during those formative years since I was exposed to a broad variety of kids who had craniofacial differences like I did. Meeting other kids

especially those with Goldenhar Syndrome at a very young age taught me that I wasn't alone and that there wasn't anything to fear.” He, too, felt the pain of bullying, but he always knew he had the support of his CCA family behind him during those dark times, “Of course, I had been through the experience of being bullied by other kids but thanks to my supportive parents and extended family, I didn't let the bullies bring me down because I was the reason they eventually changed their ways. Today as an adult, whenever I go out into the public and see people staring at me - I just smile & wave even if people give off "shocked" reactions. The way I see myself is simple - I am a person like everyone else, except that maybe I do look different. So what? I am a person with my own thoughts, personality, intelligence, life experiences, feelings, and dreams.” 


As you can see, being born with a facial difference affects the way they see and are in the world. Sabrina shares more on this, "It has certainly made me more anxious and cautious when meeting new people. To this day, I still get nervous and wonder "do they notice something different about me as I'm speaking to them? Will they think I'm incapable of doing certain things because of the way I look?". I am still a work in progress when it comes to my confidence and self-esteem. However - I have also seen how incredibly accepting some people can be. There have been certain situations where I felt very welcomed and treated equally like any other typical person - and this meant the world to me. I do feel that society is becoming more accepting as time goes on and it will keep on getting better the more we raise awareness for facial differences." 

While Fred has a different perspective with regard to communication barriers and how his facial difference has changed the way he looks at the world, "When I meet new people, I always make it a point to be bold and approach them just like anyone else would even though I always have to fight through the communication barrier because of my deafness. I always find a way to make something work no matter what. Because of my parents and how I grew up, I learned to never let anyone mistreat me or interfere with my life pursuits even if they're clueless/ignorant. I learned to be ruthless only when necessary in certain situations where there are barriers that shouldn't be there in the first place. Whenever I pursue a specific life goal, I always find a way to keep going no matter what. There will always be some good people out there who see me for who I am and treat me with the same respect as everyone else and support me in life pursuits. While our societal perceptions are improving as more and more people become aware of those with craniofacial differences, I still remind myself that we have some work to do because ignorance still exist in pockets of the today's society."


Sabrina and Fred are a beautiful couple with a special bond. With their collective life experiences, we are confident that they will be able to support one another through almost anything that may come their way. CCA is proud to have you both as members of our community. Thank you for sharing your stories to celebrate our milestone 30 years of service.

Tuesday, December 10, 2019

#WonderWednesday: Jono Inspires Us To #ChooseKind In Southern California And Texas


 

Jono Lancaster visited three Southern California schools in the middle of October. He spoke to over 1200 students and staff at Brookside Elementary School, Ana Haus School, and Highland Academy. Jono was invited to his first stop, Brookside Elementary School in Beaumont, California, by Knox Cloes and his mother, Sarah. He spoke in an assembly to 300 students about his facial difference, how the students can be more accepting to those that appear different, and finally how they can choose kind each day.  From the many photos that were taken during the day, many of the students received one-on-one time with Jono after his presentation. They talked in small groups indoors and during recess. 

Later that same day Jono brought his message to Angelica Batres' school, Ana Haus School, also located in beautiful Beaumont, California. There he spoke to 720 students in pre-kindergarten to sixth grade classes. The students of this school community embraced him, too. 


On October 21st, Jono visited Highland Academy to talk to Jordan Watkins' classmates about differences, acceptance, and kindness, too. He was invited by Dorina Watkins and some of the teachers at Highland. The school's director commented about Jono's presentation, "It was engaging and fun. The openness of the presenter really made an impact on the students. It was thorough, yet brief enough to hold their attention.”

Jono made another visit to the United States from his home country of the United Kingdom this week. Yesterday and today, Jono visited schools in Dallas-Fort Worth. He also addressed visitors to the NorthPark Center Gingertown build event last night. Each year, Dallas-based contractors, construction companies, and urban planners come together to build an entire city out of gingerbread houses. The effort helps raise money for CCA Kids. We are extraordinarily grateful to Jono for being part of this event for the second year in a row, but most especially to the NorthPark Center mall for their continued support of Children's Craniofacial Association programming through the Gingertown event. It is a fine way to celebrate the season and our kids. 


Wednesday, December 4, 2019

#ThankfulThursday: Friends of the Wojtyniak Family Raise $200 With Hot Dog Funder

Adriana Sapia and Emily Rentis with their check for $200 before
mailing to CCA! Photo Credit: Angela Wojtyniak


Many thanks to Adriana Sapia and Emily Rentis of Stevenson High School in Livonia, Michigan for hosting a hot dog fundraiser in collaboration with Leo's Coney Island in Livonia on November 19th. Fifteen percent of sales from the day went to CCA Kids. The students and their hungry visitors raised $200 in honor of local CCA kid Brooklyn Wojtyniak. We thank you, Adriana and Emily for your generosity. Thank you Brooklyn for making positive connections with people locally to help us at CCA Kids globally. Great job!



Tuesday, December 3, 2019

Jenifer Ihm Writes Books To Bring 'Comfort and Joy' Before Surgery


Some writers become authors over night, but Jenifer Donatelli Ihm of Chicago, Illinois became one at night. She finds herself most inspired to write in the middle of the night. Her son was born with cleft lip and palate, but her stories have a broader reach to other kids born with facial differences. 

Jeni with her husband and kids!

This accidental author wrote her first book with Missy Lavender, with the support of the Women's Health Foundation, for girls about their pelvic and reproductive health. The book is called Below Your Belt:  How to be Queen of Your Pelvic Region and helps to navigate pre-teen and teen girls through the changes their body makes as they grow older. It guides the reader through an exploration and explanation of the pelvic region, reproductive organs, and bowels. Health, fitness, and nutritional advice is given with whimsy and humor.

After that positive publishing experience, Jeni wanted to write more, but this time she chose to draw from her personal experiences. She has completed three separate texts for children, like her son, born with facial differences. She hopes these books will calm their nerves before surgeries, empower them to feel superhero strong because of their smiles, and know that a universe of angels surrounds them with positive energy as they forge head on through their medical journey.


Each book was written in the evening, the words seemingly just coming to her in a series of moments of clarity. Jeni's hope is that there is an illustrator out there that could bring her words to life, so that they may one day become children's picture books.

Here is the text of her most recent writing endeavor called "Superhero Smiles." If you happen to be a publisher, illustrator, or book agent, Jeni might like to hear from you. :-) 

Have you ever noticed when someone smiles at you, it’s hard not to smile back?
Sharing a smile can brighten your day and make someone feel good. Smiling at a friend who’s sad might help them feel better faster than anything else possibly could. 
Smiling on the outside makes your insides smile too. Smile every chance you get, it will help you feel amazing and cure your blues.

Try skipping without smiling. It’s kinda hard, don’t you think? Some people don’t like to smile, instead they just wink. Some people don’t like their teeth, so they try not to show them by hiding their smile. We say give it a try, smile, and be brave for just a little while. 

Everyone has their own special smile to share. Go on and simply smile, if you dare. Turn the page and discover the wonderful world of smiles, we promise there will be no grimaces, sneers or Elvis snarls.

Some smiles are big and some are small. Some show no teeth, and some show them all.
Some smiles have scars from a boo boo or cut. Some babies are born with a cleft lip and palate that the doctor carefully stitches up.

Some smiles are wide that show all their braces. Some like to smirk and make silly faces.
Some smiles are crooked and sideways and such. Some simply just grin to show they are
touched.

Animals smile all different ways. They like to act silly like you and me when we play.
Some grandparents and babies smile showing just their gums. 
Some smile to themselves while chanting yoga om’s.

A jaw-dropping smile brings energy to a room. This may mean laughing might happen incredibly soon!

The lopsided smile can be warm and fuzzy. It’s ok once in a while to force a smile if you need the money.

If you see a smile you’re not familiar with, please don’t point or stare. If you ask you might meet a new friend to play with, and they can be the best kind of all! 

Remember a genuine smile is best, better than all the rest!

Whatever kind of smile you have, crooked or straight, smile as much as you can, it will simply be great. 

Take care of that one of a kind smile, and go the extra mile. Don’t forget to floss, brush, eat smart, and exercise. Healthy smiles gleam and twinkle in the eyes. 

Smiles are infectious & contagious to others. Almost everyone smiles occasionally, even little brothers. Watch out, you too might share a smile, just remember to deliver it simply with style.