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
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 

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 [email protected] today!

Tuesday, October 29, 2019

#WonderWednesday: Avery Shares Her Story!

(L-R) Avery, Dominika, and Nova  Photo Credit: Liz Cox

Avery Cooper is spreading "Wonder" and kindness everywhere she goes. She raises funds like champ, helps other, and speaks to students too about R.J. Palacio's book "We Are All Wonders" and how to be kind to others. Avery's mother Stephanie shared with us her daughter's latest achievements, 
" [Avery] spoke to the 100 or so students on her fifth grade team a couple of weeks ago. She shared her story and talked about being kind. She has a PowerPoint and shows her RED, trach, and hearing aids. She often reads We Are All Wonders, but I’m not sure if she did this time." 

Thank you Avery for your all your hard work and service in the name of CCA during this month of October, National Bullying Prevention Month. 

Monday, October 28, 2019

Team Care for Individuals Born With Craniofacial Conditions

Editor's Note: Craniofacial conditions do not just affect the face and appearance. No, they go much deeper. This post by Liz Griffin Cox, mother to a daughter with Pfeiffer syndrome makes it clear that it takes a village to care for her child. Team care is the standard that many hospitals that care for kids with facial differencces strive for. Some, like the ones in Boston, have done an excellent job of making it work. The American Craniofacial and Cleft Palate Association (ACPA) has a list teams and providers which their medical advisory board assessed and deem to meet specific, rigorous requirements. We share that list on our website in the spirit of collaboration. Learn more here at with their permission. 

By Liz Cox

What do they say? "Team Work Makes The Dream Work," right?

Well, when we are talking about the medical care for a person with a craniofacial condition, Team Work means everything. Where we receive care, our standard appointment with our "Team" includes at least one member from each of the following disciplines:

  • Plastic Surgery (in charge of reconstruction- this is not your average boob and nose guy either- these surgeons have decades of training in pediatric craniofacial reconstructions)
  • Neurosurgery (anything going near the brain, and neurosurgery is there- this includes craniotomies, shunts, chiari decompressions, etc)
  • Maxillofacial Surgery (these are the folks that work magic from the upper jaw to the eye orbit area)
  • Dental (there can be significant dental issues with craniofacial patients, when you have less space for growth, it doesn't mean you have less teeth. think about that one for a second)
  • Orthodontics (see above- moving around teeth and or expanding palates is pretty common).

And then there's our specialists we see outside of the Craniofacial Clinic...

  • ENT (2-4 times a year, for basic trach management in our case)
  • Pulmonologist (again, thinking about all those upper airway issues)
  • Ophthalmologist (not just for routine eye exams, the eyes are a visible gateway to check intracranial pressure, as it often manifests on the optic nerve)
  • Audiology
  • Orthopedics (in my daughter's case, she has additional syndrome related fusions in her neck, back and arms, hands, and feet and bonus progressive scoliosis)
  • Orthotist- makes and maintains that awesome scoliosis brace to try and keep our curvy girl on the straight and narrow. Well, her back anyways.

The thing about a team like this is they need to work cohesively, they need to understand the role each member has, how it works within the diagnosis, and how to look at the WHOLE patient. Teams like this aren't available everywhere, and good teams like this are hard to find. Most folks have to travel for quality care (unless you happen to have a well qualified team close by, which is rare, but it happens). It takes a lot of time and energy doing the appointment shuffle, and we spend a lot of time in the car going back and forth. There are lots of days of school and social events we miss as a result. We are extremely lucky to only be two hours away from our Team. We have many friends that travel across the country for the quality of care that their child needs. We do our best to make the most of our "bonus time" in the car and play lots of games and listen to lots of music (along with the obligatory school work)." 

Thank you Liz for your powerful words. If you need help accessing team care, we can get you there! We provide travel assistance to patients and their families that require specialists that may be far from their hometown. Gas money, plane tickets, train, and hotel costs are available if cheaper housing or a Ronald MacDonald house is not near by. please contact us at [email protected]

Sunday, October 27, 2019

30 Stories 30 Faces 30 Years: Jill Patterson

Editor's Note: This piece originally appeared in the CCA Network newsletter. We bring it to you here, on the blog, to complete the 30 Stories 30 Faces 30 Years online archive. 

In the celebration of our thirtieth year, we wanted to take a special moment to recognize and celebrate one of CCA’s first families and most dedicated supporters, Jill Patterson.

Jill was with CCA from the earliest days, most notably travelling to Washington, DC and meeting with Congress in 1990. There, along with 9 other families, they spoke to Congress about the importance of craniofacial surgery and how it impacts our children’s ability to survive and thrive living with craniofacial syndromes and conditions.

From that moment, Jill’s mission in life was to advance and advocate the cause. Her heart beats to widen the circle of acceptance and create a world where everyone is accepted for who they are, not how they look.

Not only is a Jill a tireless advocate, still advancing the efforts of CCA, she is also a devoted mother to her own CCA Kid, Rob, who is featured in this newsletter as well, and his SuperSib, Erick. She also met her husband Greg, through CCA. Together, they have all been a part of volunteering and fundraising for CCA for decades.

Jana Peace, longtime CCA supporter and former Program Director, says, “Jill taught me a mother’s love for her child. She worked as our Development Director at CCA, but her first, and most important, role was mother to Robbie who had his own craniofacial condition that gave Jill compassion for helping families raise money for hospital stays. She was a fierce momma bear! I don’t think her work is what shaped her character; I think it was her motherly instinct. She was vulnerable, she was scared, but she gave 100% in advocating for her son and I think that’s why she connected with the families. She walked in their shoes.”

Bill Mecklenburg, CCA Board Member, and one of our most loyal fundraisers, was introduced to CCA via Jill. He says, “When we were informed that our daughter was born with a craniofacial condition, we found CCA. Jill answered the phone and it felt like God had placed an angel on the other end of the line to bring us comfort and hope. When we started attending retreats, we quickly realized how many lives a true angel can touch, with every one of us feeling a connection to Jill that is beyond words.

As the development director, Jill taught us to dream and dream big when she brought us to Jorge Posada’s Heroes for Hope gala. That event was the catalyst for catapulting CCA into the major fundraising category that now enables our organization to serve CCA kids and their families in ways we could only dream of less than 10 years ago.”

George Dale, Board Chair, and CCA Dad, echoes just how integral Jill has been to the CCA family. George says, “Jill is my first memory of CCA. When we walked into the registration area at our first family retreat in Washington, D.C. in 2002, she knew us all by name immediately without us saying anything and we instantly felt welcomed. We knew then that we were part of a bigger family. Jill’s dedication to the families of CCA have had an impact on so many people and contributed greatly to the growth of CCA.”

Jill retired from CCA as the Director of Development in 2018, leaving a legacy of family fundraisers that truly support CCA. It was Jill who helped families across the country host these events to raise money for CCA. Through her work, CCA grew over the years and kept building momentum. Jill encouraged the families that they could make an impact through fundraising. Her message resonated with our families, because she too has lived a similar story. Jill understands that receiving a diagnosis of any condition can be tough. Sometimes we may feel very alone and even powerless. However, for many CCA families, hosting or participating in these fundraising events can bring comfort and healing as well as a sense of community. The connections she fostered with other families and volunteers in the wider local and regional area created a team of support, even as they were supporting CCA directly.

Charlene Smith, Executive Director Emeritus,explained the amazing work Jill accomplished for CCA Kids. She says,
“I met Jill (and Robbie) 30 years ago at the hotel registration desk in Washington, D.C. when CCA representatives were testifying before the House Budget Committee. What I didn’t know at the time was that meeting would forge a 30-year relationship between us as friends and colleagues. Having Jill in the CCA office was like having a living memory bank! I cannot count the number of times I yelled to the next office, “Hey Jill, when did we do this?’ or ‘Which retreat was that?’ or ‘How much did we raise at this event?’
If she didn’t have the answer in her head, it was in archived CCA materials that she’d managed to save through the years and be able to put her fingers on in no time!"

Besides initiating the opportunity to join in the Jorge Posada fundraiser in New York, Jill was able to take the Family Fundraiser concept Darin and Dede Dankelson started by holding a golf tournament and cultivate the concept it into one of CCA’s top fundraising initiatives that lives on today.

And, when Rose Seitz came to her with the idea of a basket raffle at the Retreat, Jill turned it into a ‘hometown basket’ fundraiser that remains a highlight of the Retreat.

And, did I mention she was an expert at rhyme and alliteration in naming funders?

In the 30 years that have passed since that first meeting in Washington, D.C., we’ve had many long phone conversations, many laughs and some tears, many ‘time of our lives’ Retreat moments, many long nights selling raffle tickets in Sturgis, many long, productive, fun and, at times, stressful days at the CCA office…many moments that will keep us connected for many years to come.”

Dan Paulson, another other of the “original CCA Families,” says, ’Back in the day,’ I recall Jill with goals to be met and hard charging to attain them. Jill continues to be a great ambassador for CCA, a wonderful person, and one who is probably unaware of how she quietly made an immense impact on many people.” We love that sentiment so much, because so many people have benefitted from Jill’s passion and love for our community.

Working with Jill is a true pleasure. Jill always brought a fun, playfulness to the office. She used her talents and creativity to invent beautiful and fun ways to display raffle items, recognize volunteers, and showcase extraordinary efforts. Jill and Greg’s home was full of donated or rescued-from-the-dumpster items that might serve a purpose for CCA “someday.” She never turned down free furniture or office supplies! She curated t-shirts from all 30 years for CCA and recently helped us organize those shirts for a special project we’ll debut at coming Retreats.

Indeed, it was not just Jill who was committed to CCA, but also Greg, as expressed by CCA Mom, former board member, and ardent supporter, Paula Guzzo, who says, “We met Jill and her sons at our first CCA retreat 25 years ago. She has been a constant in our family's life as a CCA parent, CCA staffer, and friend. Whether she was working as a paid staffer or volunteering her time unpaid, Jill's commitment to CCA is stellar. CCA got a bonus with Jill's employment as her husband Greg volunteered untold time and donated generously to CCA by taking pictures at Retreats, doing whatever was needed at golf tournament fundraisers, attending CCA-related events throughout the nation, and driving CCA merchandise/materials cross country to Retreats and conferences. Jill, thank you and your family for more than I can write in these few sentences.”

Friend and fellow advocate, Diana Sweeney, parent liaison in the Division of Plastic Surgery at The Children's Hospital of Philadelphia says, “Jill and I have spent many hours supporting all children with facial differences, sharing stories and lives. We have ‘grown up together’ in the craniofacial world, and worked hard to change the way the world perceives kids with facial differences.

My friend, Jill, is a front-line warrior in the fight for awareness!”

Jill worked long hours and never thought about “overtime” or “comp time,” because truly her life was CCA-centered. Her dedication to this organization is truly unparalleled and will be her lasting legacy.

Now that she has retired, she still contributes so much via volunteering on projects at the office and staying active in the CCA Family. Her sense of humor and style is her signature, and she always comes dressed to impress at CCA events.

Transitioning into a new stage of life is not always easy, but Jill has filled her time with travel and family, which most of us aspire to do when we retire! Through it all, Jill has been an unwavering loyal friend to us all and put aside the ebbs and flows of fundraising and community organizing to be a pillar for the craniofacial community.

Thank you, Jill, Greg, Robbie, and Erick!

Monday, October 21, 2019

#ThankfulThursday: Scamehorns Walk Raises $2,000 for CCA!

Photo Credit: Erika Scamhorn

Thank you to the Eric and Ericka Scamehorn of Longmont, Colorado for raising $2000 for CCA kids. They hosted Dexter's Dash, a walk-a-thon, in honor of their son on a sunny, September day to celebrate Craniofacial Acceptance Month. Donning custom-made t-shirts, approximately 15 people walked to help kids access medical care, build empathy skills through curriculum offerings, and find community through social networking.

Though the Scamehorn's hoped for a bigger turnout, they understood that this was their first major fundraiser for CCA. They were proud of what they accomplished in their first year and wish to build upon it in the future year. Erika said, "We learned alot and are excited for next year!. I am hoping that next year we will be able to invite more people."

We hope so too! Celebrate your $2,000 raised. This is a fine, solid foundation upon which to build. Be proud of all that you accomplished, and the many lives you have changed with your participants' donations. 

NEW Overview: Surviving A Sleepover

Parents, guardians, and caregivers are you ready for your child's next sleepover? We have a new overview detailing those things to remember before you send your children to sleep over their friends' houses. 

Thank you to our friends at ConnectMed for helping us with the development of this overview. We could not have done it without you. 


Sunday, October 20, 2019

Be Mindful Mightys, #52SmallThings Challenge

Editor's Note: I am reposting this piece shared by The Mighty through its #52SmallThings Challenge newsletter because I feel mindfulness, meditation, and self-care are important for all. I especially needed this nudge on meditation because my life is just so jam packed with work, life, medical issues, and other 'busy-ness.' All the while I am compounding it with negative and angry thoughts, which ramps up my anxiety, and wreaks havoc on my ability to control my behavioral impulses. Does this sound like you? Well, if it does it means that you need to spend some time breathing while letting those negative, angry thoughts float by like clouds as Sofia Borodulina describes below. I hope you find this #52WeekChallenge as helpful (and timely) as I know I will.  

P.S. Be sure to watch the video at the bottom for some added help. 

My name is Sofia Borodulina. I’m a mindfulness teacher and I’m delighted to be your self-care host this week.
Did you know we think up to 60,000 thoughts a day — 80 percent of which are negative? These thoughts affect not only our joy and happiness, but also our physical well-being. However, the biggest issue is that most of the time we are not even aware of them. And you can’t change something you are not aware of, right? 
Mindfulness teaches us to train our “awareness” muscle so that we can spot a thought the moment it arises. If it is a thought that doesn’t serve us, we can simply let go of it instead of getting lost in it.
The ability to flex this awareness muscle on demand is attributed to creating long-lasting improvements in our lives: better sleep, less anxiety, better stress management, less rumination, a healthier emotional reactivity, resilience and the list goes on and on.
Image shows a woman dressed in a red suit against a red background. She has blonde hair and has one hand in her pocket with a smile on her face.

Meditation is basically a gym for the brain and there are a plethora of ways to meditate. But for the sake of simplicity (life doesn’t always need to be complicated), we will learn the most basic form — breathing.

That’s why this week’s Small Thing is: Meditation.
For this week’s challenge, we’re asking you to spend five minutes each day focusing on your breath.
Here is a five-step guide to your first meditation:
1. Find a calm place where you won’t be disturbed.
2. Sit down on a chair and find a comfortable position, keep your feet firm on the floor, bring your shoulders to the back and keep your spine straight. You can close your eyes or leave them slightly open — be sure you relax your jaw.
3. Take a deep breath in and out and then simply breathe (don’t force anything, juuuust breathe). 

4. Use your breath as your focus of attention. Thoughts will come up. As soon as you notice them, don’t judge them. Simply let the thought pass by — like a cloud — and come back to focusing on your breath.

5. Repeat, repeat, repeat until your meditation time is over.