Wednesday, November 6, 2019

NorthPark Center Creates Holiday Magic For CCA Kids on December 10th



Children’s Craniofacial Association (CCA Kids), a national nonprofit headquartered in Dallas and founded in 1989, has worked for 30 years toward the vision of a world where all people are accepted for who they are, not how they look.

Children’s Craniofacial Association hosts Jono Lancaster, UK motivational speaker and international activist, as we celebrate the 10th Annual Gingertown build event on Monday, December 10th at 5:00PM at NorthPark Center, downstairs by Nordstrom.  

Lancaster was born with Treacher Collins syndrome, a facial difference affecting the structure of jaw bones, ears, and head. He was born in the United Kingdom, but shortly after his birth parents relinquished their parental rights and he was placed in foster care. Fortunately, he was adopted by a loving mother who offered him a stable home. Jono experienced bullying and teasing growing up, today he still contends with cyberbullies on the internet. His life story was the subject of a series of documentaries that aired on the BBC. For over a decade, he’s traveled the world giving hope to kids and families affected by Treacher Collins syndrome and various disabilities, and delivers relevant inspirational speeches focused on learning to love yourself - no matter what makes you “different.” 

He will be speaking at the Gingertown build, where we hope you will join us to watch local architects and builders erect a gingerbread town and Jono speaks to “build up” our community with tolerance, acceptance, and kindness. 

Later that week, NorthPark has gifted CCA families the chance to see the incredible NorthPark trains and visit Santa with a generous donation of tickets for the CCA Kids. Tickets are available thanks in part to Lilly Pulitizer who distributes them to our families and hosts an annual shopping day to raise funds for our services. Saturday, December 14th at Lilly Pulitzer, 10% of the day’s sales from 2pm-5pm will be donated will be donated to CCA. Anyone can come by and shop for a great cause! 

CCA offers programs and services including Patient Financial Assistance for Medical Travel, the Annual Family Retreat & Educational Symposium, and kindness education and bullying prevention programs in schools across the country. Learn more about at http://www.ccakids.org

Thursday, October 31, 2019

30 Stories 30 Faces 30 Years: The Guzzo Family








“Intangible” sums up what CCA means to our family. One can’t put a price on what we get from CCA: Family, friendship, understanding, support, knowledge, camaraderie, and unconditional acceptance.

                  --Paula and Bob Guzzo, caregivers to their son, Scott

The Guzzos -- Paula, Bob, and their son, Aaron -- are the ultimate, three-member caregiving team. Watching this family create an ecosystem of support, opportunities, and life-enhancing love for their son, Scott, is something that must be experienced. Seamlessly,  
the Guzzos waltz into all kinds of spheres, make the space their own, putting everyone at ease, while simultaneously elevating Scott, age 36, to be his best self. And they do it all with dignity and grace many of us only experience through yoga teachers, pastors, and priests. Though their actions may appear easy, Paula assures us that all three of them, Bob, Paula, and Aaron, are “Calm on the surface, but paddling like crazy underneath.” 



Sassy Moms' Club at Annual Retreat 2019
Family Advocacy work with the Governor of Indiana

Paula and Bob were tireless advocates from the very beginning, researching each and every diagnosis that Scott was given in hospital and pharmaceutical libraries they had access to through their employers during the mid 1980s. They went on to fight to get Scott into an inclusive classroom, in the same school as their younger son Aaron, in their hometown of Evansville, Indiana. Much of their educational and Individualized Education Program (IEP) journey was documented in a series of informative blogs, published on the CCA Kids blog in October 2013. The posts are chock full of insights and ideas that only the Guzzos could create thanks to their taking a critical eye to interactions with school, local, and national government officials. At the end of the second blog in the series Paula says it well, “Please do not read this and feel sorry for Scott or us. Instead, celebrate the victories and know that one person, one family, can and does make a difference.” And boy, have the Guzzos done that for their son and for many other children across the country!

Cher Crewz 2018
Paula, Aaron, Bob, and Scott

Scott, born with what was initially an unnamed condition, was later diagnosed at age 11 with Crane-Heise syndrome. The extremely rare syndrome with only 10 known cases to date, affects his face, skull, and other parts of his body. He depends on help from his family and care attendants to see him through each day. Nevertheless, Scott has an indomitable spirit, a spit-fire wit, and impeccable taste in music. Paula says, “Scott embraces life and celebrates EVERYTHING—all day, every day! He is joyful. Scott is nonjudgmental (mostly) and accepting. Scott’s faith is unwavering. He is bold and kind at the same time. He leads us in those areas.” Unsurprisingly, Scott loves to attend concerts and works at the Evansville Ford Center as an usher. He loves snapping pictures and traveling to new destinations as his busy schedule allows. 


               
Caretaking, at any level, is hard work for the family of a person born with a craniofacial condition. “As parents, we try to delicately find the balance of shielding Scott from life’s cruelties while at the same time sharing him with the world,” says Paula. The devoted couple somehow make it a priority to carve out time for themselves, too. A healthy relationship is the bedrock upon which their family ecosystem is built. Without the love, faith, and trust that Bob and Paula share, the beautiful life that Scott enjoys would not be possible.


Celebrating Scott's Birthday last year 

While the Guzzo family redefines normal in a way that works for them, their approach to life works for all of us: “We look for the joy in every day and know that tomorrow is a fresh new one.” Over the years, Paula appreciated serving on CCA's Board of Directors, and the family enjoys continuing to represent CCA at acceptance-raising and fundraising events throughout the country.

Thank you Bob, Paula, and Aaron for all that you are and all that you do. You are a powerful example for so many CCA caregivers, and indeed, the care you’ve given our own organization has helped us grow, too.
New Parents, Bob and Paula, hold their newborn in 1983

November is National Caregivers Month. Please help us celebrate the caregivers in our lives and community!


--Kara Jackman

#ThankfulThursday: TopGolf Huntsville Was A Hit


Wilson Family enjoy the day at TopGolf in Huntsville, AL to benefit CCA Kids

On a sunny October afternoon, CCA friends and families came together to celebrate acceptance and play a TopGolf tournament in Huntsville, Alabama to raise funds for our programs and services. The day went by without a hitch, thanks to the thoughtful planning by hosts, the Mossholder family, and the TopGolf staff. The day was made even more special with visits from friends new and old.  


What always amazes our team is how the families themselves show up and give generously to raise funds and support for an organization we all love. To kickoff the event, Erica Mossholder, Executive Director, offered a warm welcome to her hometown supporters, and introduced Mindi Stowe, CCA Mom, who gave a moving speech about her family’s first Retreat experience this year
Cindi Stowe and Cindi Anderson
in Arizona. Mindi described how her family, including husband
Jeremy, CCA Kid, Carter, and SuperSibs Wesley and Jackson, drove all the way across the country from Decatur, AL to Scottsdale, AZ. She described the impact that meeting a hotel full of families like theirs made on their lives. Many of us welled up with tears at Mindi’s candidness and earnestness. But before we could reminisce too long about our own journeys, TopGolf Pro, Jonathan Lynch took over and said it was time to get playing! He explained the game rules, while food was served. Quickly team assembled and made their way to their bays to warm up.  

There were several family teams, which we sincerely appreciate! Laura, Heath, and CCA Kid, Beth Wilson came out from Boaz, AL and brought their family with them to play. Nathosa Click and her parents (we missed Dad, Justin, and SuperSibs due to scheduling conflicts), came from New Hope to enjoy food and fellowship where her CCA Kid, Taylor, learned he has an amazing long ball off the tee! New to CCA, the Damron family, with CCA Kid Luke, and SuperSibs, Spencer and Paul,
Damron Family
joined us and finally experienced what so many of us often say, “I feel like I know you from Facebook, but it’s so much better to meet in person!” We are so glad they drove all the way from Tuscaloosa to meet their friends “IRL – in real life!” 

Casey Deakins
The tournament heated up as the teams vied for first and second place, but in the end, The Rammer Jammers, took top spot, with team member Oscar Brown winning first place in the Men’s Individual Award, too! Also from this team, the Women’s Individual Award went to Dede Allen. The Nerds, a team put together by volunteer, Eric Klauber, and his dedicated coworkers from BASF, took home the second place prize. Finally, our Golf Pro, Jonathan, wanted the kids in attendance to take a swing at a quick competition, too, so the juniors played a round and Spencer Damron took home the prize of everyone’s favorite food, pizza! To close us all out, CCA Adult, Casey Deakins, who drove over three hours from Atlanta, GA, sent us off with heartfelt thanks. As one of the earliest CCA Kids, she is a testament to all the work CCA has done for the last 30 years. Casey described her “Aha!” moment when she attended Retreat and found a friend who looked just like her. Now, no matter where she goes – from the grocery store to her job at Kennesaw State University, stares and comments don’t get her down. Instead, she greets the world with the confidence of having her CCA family behind her. 

Jeremy Stowe wins the Yeti Bucket
raffle package
One of the coolest stories from the event, however, was told upon getting to know our energetic and enthusiastic GolfPro, Jonathan, we found out he, too, is a CCA SuperSib! Jonathan has a brother, Nick, who has Goldenhar syndrome. We found this story especially touching, because sometimes you never know the true reaches of your community until you open up and share your own story.

We must also thank our amazing

volunteers who made this event a success! Thank you to our speakers, Mindi Stowe and Casey Deakins, as previously mentioned, and Eric Klauber, who assisted with preparation, setup, and fundraising. Finally, Andy Yarbrough, CCA Dad, collected hundreds of dollars of goodies for our raffle, which truly made the fundraiser a success for our kids. Altogether, we netted over $1,500 for CCA!
TopGolf Huntsville winning adult men's team!

 Many thanks to the local outpouring of love and raffle items from: 

Ainsley Bowen and @Homes Realty Group
Pump it Up, Parties and Bounce Houses
Tate Farms
Fantasy Playhouse Children’s Theater and Academy
ZOOM Indoor Cycling
MisterWash Car Wash
St. Nick’s Knives
Kendra Scott Bridge Street
Jen Robinson Lash Design
TopGolf Huntsville
Outback, Mike Foreman
Panera Bead
Brickhouse Sports Cafe
Bravo Cucina Italiana
Connor’s Steak & Seafood
BJ’s Brewhouse
Cheddar’s Scratch Kitchen
Drake’s
Lawler’s BBQ
Chuy’s Tex Mex
Chick-Fil-A Meal (Madison, AL)
I Love Sushi
Tropical Smoothie Cafe
Earth & Stone Pizza
Tazikis Mediterranean Cafe
Another Broken Egg
Mellow Mushroom
Shrimp Basket
Phil Sandoval’s Mexican Restaurant
Ol’ Heidelberg Gernman Restaurant 
ModPizza

Metro Diner

Wednesday, October 30, 2019

Houston, TX Parents' Night Out Hosted By Baylor University and Texas Children's

Join Texas Children's Hospital for a Parents' night out. Bring your kids, drop them off for fun with games, crafts, food, and fun, while you share time with other adults during this one-of-a-kind event for all. Please RSVP by November 4th to save your spot! Email geneticsnight@bcm.edu today!