Today we’d like to introduce you to Kara Jackman.
Kara , let’s start with your story. We’d love to hear how you got started and how the journey has been so far.
I’m here to introduce you to Children’s Craniofacial Association (CCA Kids). We are a devoted team composed of five dynamic and enthusiastic women, Erica Mossholder, Executive Director; Christine Andler, Director of Development; Annie Reeves, Programming Coordinator; Khadija Moten, Outreach Coordinator, and me, Kara Jackman, Marketing and Communications Coordinator. CCA Kids is a 501(c)(3) nonprofit organization, based in Dallas, Texas and founded in 1989, that serves over 20,000 families per year. CCA’s mission is to empower and give hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look.
Each year approximately 50,000 children in the United States are born with or develop some form of facial difference (previously called disfigurements). In many cases, reconstructive surgeons can correct these problems early—often while the children are still infants. In other cases, however, reconstruction is not so easy or even possible. To assist these families, CCA offers programs and services including Patient Financial Assistance for medical travel to access quality medical care, the Annual Family Retreat & Educational Symposium, kindness education and bullying prevention programs in middle schools across the country through the use of the New York Times-bestselling book, “Wonder” by R.J. Palacio.
In 1990, Cher became involved with the organization after having starred in the Movie “Mask” in which she played the mother of a child with a craniofacial condition.
Cher developed personal relationships with many children who have craniofacial conditions. She was instrumental in jump starting craniofacial awareness across the country and in Washington, D.C. throughout the early part of the 21st century. She provided financial support for our organization’s annual family retreat for over two decades. Her current impact is smaller, yet Children’s Craniofacial Association continues to grow through a dedicated constituency that hosts fundraisers, provides generous individual donations. and earns grants from corporations and other nonprofits.
Our Annual Family Retreat and Educational Symposium brings families and adults from across the country affected by craniofacial conditions together for an action-packed, four-day retreat in a different city in the United States during the last weekend in June. Last year’s Annual Retreat in Salt Lake City featured 167 families, over 500 people, the largest retreat yet. All families had one or more family members with facial differences, from Apert Syndrome, Treacher Collins Syndrome, Pfeiffer Syndrome to Cleft lip and Palate and Craniosynostosis.
Children’s Craniofacial Association also helps children get the medical care they need by paying for travel costs. Gas, flights, hotel stays, and more are covered so that children can get to the best medical care available in their region of the United States.
We also have a wide range of educational resources for everyone from new patients to medical professionals in the form of syndrome booklets, overviews, and curriculum for the book “Wonder.” The educational arm of CCA has become increasingly strong since 2012 when R.J. Palacio’s book was published. This book helps our children out immeasurably as it addresses all the areas of their lives at home, in school, facing all the issues they face, specifically bullying. We provide free curriculum for teachers, the ability to connect with a “real-life Auggie” Pullman like the protagonist in the book, “Wonder,” to come and speak at a school after students have read the book, and more as we continue to work on additional empathy and bullying-prevention curriculum for schools.
Great, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
Every nonprofit and business has its challenges. Our team has always met them head on, buoyed by our positive outlook.
There have been so many ups and downs. From the beginning, we faced financial challenges so great that our Executive Director Emeritus, Charlene Smith, moved out of her office, that had been given as donated space, and took the whole operation into her garage when the donor no longer could afford the free space. Then, during various economic downturns, we have relied on board members to help us close gaps and see us into the future despite uncertainty. We rely on the support of individuals, so when times our tough, they are hard for us all. However, we want to set the example for our children through our words and behavior that no challenge is too great. When our community, our family, comes together we meet each other’s needs. CCA seeks to impress on our people that it is always best to #ChooseKind and that being #DifferentIsCool. Our differences are our unique strengths.
Children’s Craniofacial Association – what should we know? What do you guys do best? What sets you apart from the competition?
We are making the world a kinder place! Our voices inspire and set us apart in a positive way. Instead of seeing our facial differences as a burden, we see them as an opportunity. We often say, instead of asking, “Why was I born this way?” we want to inspire and empower our people to say, “I was born to do this!” For example, our #ChooseKind educational initiative allows both the CCA kid – the speaker – to benefit from having a platform and a tool to use to talk about his or her difference confidently. This lays the groundwork for success in life, from school to job hunting and dating. If you own your difference and are at ease discussing it, you will excel. The recipient of their story will be forever, radically changed for the better! Our audiences tell us that they will never look at a person with a difference the same way. We empowered our kids and the people they speak to introduce themselves and connect with someone who looks differently in a kind manner. We provide them the words, the instructions, and the encouragement to talk to others, instead of shying away in embarrassment or fear. This dual service sets us apart and is changing the way people interact.
What moment in your career do you look back most fondly on?
Our Executive Director, Erica Mossholder told me this story. She says, “For me, it actually happens annually. There is always a moment where a new child attending our Retreat for the first time first sees another kid that looks like them. It’s pure magic. It always starts the same way. I’m talking to Mom or Dad, and the child is hiding behind their legs, shy, nervous … then, a kid about the same age will run up and say “HEY!” The newbie is stunned. She’ll walk out from behind her parent… and the veteran attendee will jump right in and say, “What is your name? I’m Taylor!” Instantly, you can see a connection. This past year, the newbie was touching her own hearing aids, marveling that this little girl across from her had the same ones. Meanwhile, the veteran, grabbed her hand and said, “Ooh, I love your nail polish!” totally normalizing the moment and for the first time the introduction had nothing to do with her facial difference. Getting to witness these moments every year is the proudest thing I do.”
Each of the staff members have similar stories where these interactions of acceptance and hope happen. For me, I love helping adults, many of whom have been with the organization for its entire history, meet and conquer the challenges of living in their 20s and 30s. We meet monthly to talk about the challenges and successes they are experiencing in their lives. We talk candidly about everything from how to start a conversation to bigger issues like consent. Watching them put what we all learned from one another to work in the real world, in real time, is the ultimate reward. It is just beautiful!
At Annual Retreat, we see even more beautiful moments. During the 2018 Annual Retreat and Educational Symposium, we had the largest group of families come to our event in June. Our retreat this year hosted 167 individuals with facial differences and their families. For the past three years, we have hosted an average of 530 people at this yearly event. In 2019, Annual Family Retreat and Educational Symposium will be hosted in Scottsdale, AZ. Our goal is to host 600 people at the 2019 retreat. To that end, we are looking for scholarship sponsors for families that cannot afford to attend a Retreat. Families apply for these scholarships from now until the end of the year, December 31, 2018. If businesses or individuals are interested in donating funds to bring a child and their family to retreat, they can donate at http://www.ccakids.org.
In helping CCA, you are literally saving lives through medical care and giving children and families a social network, a family of friends that they can trust for the rest of their lives. Everyone at retreat is on a similar journey, filled with similar experiences. We all just “get it.”
Annual Retreat is a special, positive, welcoming, environment filled with loving-kindness and acceptance. Everyone understands one another and accepts everyone from all walks of life, political affiliations, ethnicities, and socioeconomic backgrounds.
- Individual Retreat Scholarship (Air, Hotel, Registration) $1,000
- Family Scholarship (Air, Hotel, Registration) $2,500
- Donate at the amount of your choice $1 or more
- Address: 13140 Coit Road, Suite 517, Dallas, TX 75240
- Website: http://www.ccakids.org
- Phone: 800.535.3643
- Email: contactCCA@ccakids.com
- Instagram: @ccakids
- Facebook: https://www.facebook.com/
- Twitter: @CCAKidsTweet
Images with IMG filename prefix were taken by Sydney Pexton, Images with TIA filename prefix taken by Dezember Photography, Salt Lake City, UT