Thursday, December 31, 2015

CCA Adult, Meg, is Grateful for Her Doctors' Research

Today's blog post comes from another of our CCA Adults. Meg Storie, one of our committee members, submitted this news article for the CCA blog about a study showing improved health when doctors delay clamping the umbilical cords of premature babies. The lead researcher is Dr. Carl Backes. Meg was one of Dr. Backes Sr.'s patients and we're excited to share this research his son, Dr. Backes, is studying. Meg shares memories of the two doctors and reflects on her gratitude that they were there to help her early on.

Dr. Carl Backes met me when I was only days old. He was my pediatrician until I was a preteen.  He knew he wanted to be a Neonatologist, caring for preemies, shortly after his assigned rotation where he helped save his first premature baby. As for me, he was a wonderful doctor. I was born with a heart murmur, but luckily it went away. When I saw this article, I showed it to my mom and we reminisced about my early days. She remembers that Dr. Backes used to talk about his son, who is now carrying on his father's legacy, but at that time was mainly concerned with loving graham crackers. Young Dr. Backes Jr. also used to help around the office -- he answered the phone all by himself! And Dr. Backes Sr. was a very kind and accommodating doctor... I remember once I had my friends Emily and Sam accompany me to get a shot!

Dr. Backes worked from 1981 to 2013, helping countless babies and children along the way. His son followed suit and also became a physician, specializing in cardiology and neonatology. Hopefully, he'll be able to help more babies, including babies with craniofacial conditions who also have heart conditions by something as simple as delaying clamping the umbilical cord. I found this article to be particularly interesting for CCA parents.

I tease my friends that I should go back into my incubator. But truthfully, I’m really fortunate to be looking out my backyard viewing the beautiful sunflowers I planted. Thank you, Dr. Backes!

Happy New Year, friends.

Wednesday, December 30, 2015

Young Researcher Invites CCA Students to Participate in Survey

A few weeks ago, Haley Biane from Washington State, contacted CCAKids. She asked if we could help her with her science fair project by sending out a survey to our families for students to take. I spoke to Haley and her Mom to learn a little bit more about her work and then we set up an interview.

Haley told me that last year she worked on a project called "Beautiful Faces, Craniofacial Abnormalities," and that her project had won three awards, including First Prize in the Washington State Science Fair.

Haley developed an interest in researching craniofacial differences after browsing her Kindle and finding a story about a young girl with a facial tumor. After reading several more stories, she was motivated to not only find out more about how to help the world become more accepting of people with differences but also to focus on becoming a craniofacial surgeon herself one day.

To build off her project from last year, this year Haley is researching how appearance affects students' self-esteem and their interactions at school. This type of research could help in educating students against bullying and by letting students know that we all feel insecure at times but it is never okay to discriminate, tease, bully, or exclude someone for how they look.

I interviewed Haley and below you will find a short clip of our conversation and an invitation to participate in the survey. Click here (or press play below) to listen and watch.

STUDENTS: You can participate in this survey! The survey will remain open through mid-February to collect answers from students with and without differences. Your answers will help Haley evaluate the impact of appearance on students' self-esteem.

Thank you for participating, and thank you Haley for bringing awareness to our vision to create a world where everyone is accepted for who they are, not how they look!

Tuesday, December 29, 2015

CCA Adult Jaci's Community Outreach

Jaci Samhammer, one of our CCA Alumni members, has been out and about this holiday season spreading cheer and volunteering. We're excited to feature stories from our Adults and Alumi this week about the reasons they give back and what they hope to accomplish in their communities. Please enjoy today's repost from the Bucks Local News detailing how Jaci is active as a local American Legion Auxiliary member. Not only does Jaci volunteer for the American Legion, but she also recently hosted a fundraiser for CCA there and raised over $500 for CCA Kids. We love the attitude of giving displayed by our Adults and Alums. Way to go, Jaci, and thank you to all the members of the American Legion Post 317 for supporting your community and CCA Kids.

By Petra Chesner Schlatter
[email protected]

YARDLEY BOROUGH >> “Oh Christmas tree! Oh Christmas tree!” – so the German carol goes.


The Sons of the American Legion (SAL) have been manning the sale every weekend since Black Friday with hopes of selling more than 300 trees this year in support of the American Legion.

SAL member Rich Sullivan, Jaci Samhammer, a member of the Legion’s ladies auxiliary, SAL commander Jeff Lippincott were on duty, manning the tree sale on a recent Sunday afternoon.

Lippincott, who is a past commander of the post and now serves as judge advocate for the post, said the tree sale is the SAL’s main income.

“What we do with sales determines what we can do for the Legion program and veterans throughout the year,” he said.

Adam Keister is the coordinator of the annual sale. He said shipments of trees arrive regularly throughout the sale from North Carolina and Oregon.

His grandfather, Raymond, served in the military. Keister joined the SAL after he started going to the Legion with one of his co-workers. Now he’s the chief elf of the SAL Christmas Tree Sale.


Proceeds are used to fund the SAL scholarship program, the purchase of the American flags which decorate the main thoroughfares in the borough every year, equipment for the Legion and supporting functions held at the Legion.
 Great job, SAL! We know you made Christmas special for a lot of folks this year. 

Monday, December 28, 2015

CCA Adult, Casey, Encourages All of Us to Pay it Forward

“Be the change that you wish to see in the world.” - Mahatma Gandhi 

With the holidays coming to a close, and a new year approaching, I chose to reflect on a new personal mission of mine. I combined choosing kind with paying it forward on a few occasions. 

To me, by choosing kind, I need to act on my words. It's one thing to share a hashtag or wear cool shirts, but it is quite another to live it daily.

Furthermore, if I am to ask someone to choose kind by being accepting of someone with a facial difference like myself, then what is stopping me from helping someone else as a way to pay forward the act and continue the movement? To make the world a kinder place, I realize it begins with me.

We ask the world to choose to be kind to those with facial differences, but think about how much better this world would be if we were the change as well and offered kindness up front. Let's take our #ChooseKind message further... together me and the other members of the CCA Adults and Alumni committee are putting into action everything we talk about. We are going out into our community with resources and packets to join with libraries, teachers, doctors, and business owners. We are thinking of new and exciting ways to promote kind cities and towns. As the vice-chair of this committee and CAM picnic host, I wanted to do something to give kids and even adults the same experiences I have through the friends I have met and memories I have made with CCA. 

After being involved with so much kindness at retreat, I started volunteering at another local nonprofit, that provides equine therapy. I see the benefits equine therapy has on a young child who's different like me. The movement of the horse coupled with instructor-led exercises not only serves to help the child physically, but also helps them emotionally and mentally through boosting confidence, connection, and morale. 

I'm making a call to join, not just in spreading awareness of craniofacial conditions, but of spreading kindness, too. It takes more energy to act than to speak, but it is worth the effort. We have tipped off the movement with our Wonder presentations and the CAM picnics, but I challenge readers to take things up a notch. How will you be the change in 2016?

-Casey Deakins

Friday, December 25, 2015

Wednesday, December 16, 2015

My Mission, by a CCA Adult

I am writing today because I want to share a bit of my story of what it was like for my family and I growing up - before CCA even existed - so that I may share my own personal experiences in hopes that other parents of children with craniofacial differences can be able to gain some peace of mind and clarity when starting this journey and have hope that your child will not only live a happy, full life but also make a positive impact on the world at large. 

Growing up, my parents and I never really had any type of support. Emotionally, we did not receive any sort of help. Since I was born in 1976, there was no such thing as the internet, or even computers and CCA wasn't around during my earliest years. Perhaps this was the most difficult part for my family. 

From my own perspective growing up, I really didn’t realize I was very different than anyone else. Naturally, I was very aware of the countless surgical procedures I had to have, but I suppose in a sense I wasn’t aware that the surgeries were because I was any different than anyone else, if that makes sense. My mom has told me I was always so happy growing up, I suppose that was because I was unaware of being different and at home I was not treated differently. However, as the years went on, especially when I was mainstreamed into my sister’s school, I became more aware of how I looked and that I wasn't quite the same as other kids in certain ways. As I became aware of these differences, I started feeling the emotional strain of living with a craniofacial difference. 

It took me a while to accept the fact I didn’t look like my sister, or really anyone else in my family. Unfortunately, like many kids with differences, I was bullied and ridiculed, but as a defense mechanism, I tried to block it out. People stared when I was out in public but my parents noticed it more than I did. Even though I may have noticed, the most important thing for me was that my parents were supportive of me and so I had a place to belong and a family to rely on. 

But even though they were completely supportive and insisted that I was beautiful, no words could ever be enough to make me feel completely whole all the time. Thankfully, the strong foundation they gave me helped me through the hard times and I learned that accepting myself was the key factor. Self-acceptance doesn't come easy to any of us, but for someone with a facial difference I knew it was something critical I had to learn to survive. It took me a couple of years, perhaps into my 20’s, to get to the point that I didn't care what people thought about me, or if they stared. I accepted that people are social creatures and curious (to a fault), and the stares and rude comments were mostly because they were unaware and uninformed. Nowadays, I'm on a mission to help spread the word so the general public is more informed about craniofacial differences and has some knowledge of the importance of kindness towards everyone.

While I am not always able to accept myself, even as an adult, it is something that I am committed to nurturing within myself. I aim to never feel sorry for myself, even though I do often wonder what sort of plan God has for me being different, and why He made me the way He did. Perhaps I'll never understand the "reason" or my calling, but I do know that making a difference is something I want to do in the world. 

Since I realize that awareness is so very important and develops empathy in others, I, along with the other CCA Adults & Alums, educate people about craniofacial differences through outreach to local medical offices, libraries, and at my church. I want others to know that I am just like everyone else. Yes, my hands, feet, and face might look different than someone else’s due to me having Apert Syndrome, but on the inside, my heart and my soul are just like theirs ... and yours. In short, I want people to know that I am a human being who deserves to be respected, who deserves to feel love and be loved. If I can help other people realize and understand that me and all the CCAKids out there deserve love and respect, I know I will have made that difference I want to make. 

-Cece Rivers

Monday, December 14, 2015

Media Monday: CCA Adult, Nick, Featured in Local News!

Today on the blog, we are so excited to present a recent newspaper article feature Nick Wiese from Pennsylvania, who is a member of our CCA Adults & Alums committee. Nick serves as Treasurer of the committee and has been helping CCA get the word out about our programs and services for children and adults affected by facial differences. We're so glad Nick has been featured and we're happy to share this story today!

Marshall resident does not let genetic condition slow him down

By Laurie Rees
Sunday, Dec. 6, 2015, 1:22 p.m.

Nick Wiese is anything but ordinary, although most days he wishes he was just another face in the crowd.
Wiese, 26, of Marshall, has Apert syndrome, a genetic condition that causes skull bones to fuse prematurely, preventing enough room for the brain to grow properly.
“I kind of wish I was like everyone else. I wish I didn't have the disability I have. It's a very unique life,” he said.
Yet Weise does not allow his condition to stop him from holding two jobs, bowling and speaking out against bullying.
Only about one in 65,000 babies is born with Apert syndrome, according to the National Organization for Rare Disorders. There is no known cure. The disorder has caused his fingers and toes to fuse together. Wiese has five fingers, including two small thumbs. All four fingers on his left hand are fused together.
As a cashier at Giant Eagle in Pine Creek Center in McCandless, Wiese notices when children and adults stare.
“I try to keep my composure,” he said.
And he does not let it impede him from scanning cart-loads of groceries, handling fists full of coupons and cash, and bagging items.

Giant Eagle's Front-End Team Leader Susan Joyce, 55, of Brighton Heights, is amazed by Wiese's abilities.
“I don't know how he does it. Do you know how difficult it is to open those plastic grocery bags?” she said.
A little farther up the road, Wiese works part-time at Cinemark Theatre at McCandless Crossing, where he works up to 24 hours a week as an usher.
“Nick is great with customers. We put him in one of our most exposed positions. For an hour at a time, he greets people as they come through. He does everything we ask him to do, including moving from theater to theater to pick up (trash) following each show, check restrooms and keep them in order. He's an all-around great kid,” said General Manager Sam Geraci, 44.
In his spare time, Wiese advocates for children with Apert syndrome, and serves as treasurer for the Children's Craniofacial Association, a national, nonprofit organization based in Texas that addresses the medical, financial, psychosocial, emotional, and educational concerns related to craniofacial conditions.
He also has appeared as a guest speaker at Ingomar Elementary School in the North Allegheny School District, where he speaks out against bullying.
“I tell the kids my life story and how I was bullied and how it felt. To me, doing that is pure joy because it lets kids know they're not alone, that someone has gone through what they might be going through,” he said.
Wiese is active in sports, too. As a bowler, he has won one gold and two silver medals in the Special Olympics.
“I have to bowl with two hands, but I use a normal bowling ball that I purchased. I have my own pair of bowling shoes with velcro,” he said.
He also enjoys horseback riding and volunteers as a side walker for a local therapeutic horseback riding organization.
Wiese has undergone seven surgeries and five medical procedures since birth, including plastic surgery and interventions to relieve breathing problems. He had to take speech, physical and occupational therapies from preschool through his high school years.
In 2007, he graduated from North Allegheny Senior High School.
He is looking forward to moving out of his parents' home and into his own apartment in the coming months, where he can enjoy his independence and do his own cooking and cleaning.
“I'm still working on my cooking,” he admits. “It's mostly microwave dinners, but a few days ago I made my own banana pudding bread.”
“I wouldn't put this life on anyone,” he said. “But still, I'm truly blessed.”

Friday, December 11, 2015

Holiday Shoppers: Shop to Donate!

If you're still shopping for the holiday season, we wanted to remind you to please shop through donation portals ... special links that give CCA a portion of your shopping total!

When you shop through special links  - and - and select CCA as your charity of choice, a portion of your purchase will go to CCA each and every time! It's incredibly easy to make an impact, just make sure you bookmark these links so you never forget to shop via the donation portals.

It may seem small, but when our whole community participates the funds really add up.

Here are three main ways to "Shop to Donate" for CCA.

First, shopping via for your everyday needs helps send more kids to surgery and to Retreat. It's great to know that when you are buying your daughter's textbooks, a new carrier for your pooch, and your TP in bulk, that those every day items are bringing smiles to CCA Kids' faces.

Next, shopping through will allow you to shop your favorite retailers (Gap, Bed Bath & Beyond, Edible Arrangements, Vistaprint... and more!) and access their excellent coupon offerings. Plus, did you know you can also book travel via Higher value purchases mean even more money goes to support CCA Kids. 

Finally, is offering a great holiday promotion... including a $5 bonus for CCA if you decide to tackle holiday shopping early! Read on for their current special...

So what are you waiting for?! It's time to get your shop on... and we THANK YOU in advance.

Wednesday, December 9, 2015

CCAKid Alexa's Cooking Class

We love our families who think of fun and creative ways to raise funds for CCAKids. Today on the blog, Denise Rast and her daughter, Alexa, show us how to make Chicken Enchiladas and Truffle Fudge Brownies using Tastefully Simple ingredients. YUM! 

Through Tastefully Simple, Denise is raising funds for CCA with an online shopping party.

Together, she and Alexa made this adorable video cooking lesson! Looks delicious! 

You can shop for this recipe and more through Denise's online shop:
Shop anytime now through December 30th and 15% of each order goes to CCA. 

You can even host your own online party for CCA and not only does CCA get 15% of all sales YOU earn FREE product. For more info, contact Denise

Thank you, Alexa and Denise! Let's get cooking! 

Tuesday, December 8, 2015

Ask the Doctor: Intracranial Pressure

CCA posts a monthly blog series called, "Ask the Doctor." You can submit your questions to Annie Reeves ([email protected]) and we will ask Dr. Earl Gage of Kids' Plastic Surgery in St. Louis to answer them. Thanks Dr. Gage for helping spread information and resources for our cranio families! Today's question is about intracranial pressure.

Ask the Doctor

Question: How accurate are spinal taps when it comes to checking intracranial pressures? My son's elevates pressures do not show up on any of the standard tests. The only way was an ICP bolt when numbers topped out at 62. Will a spinal tap give compatible numbers? 

Answer: Spinal taps are not a good or reliable measure of intracranial pressure. Although the opening pressure (or the pressure that is generated when a spinal tap is performed and the dura is first punctured) can give an estimate of intracranial pressure, the pressure that is measured can be skewed by a number of factors, including physician’s procedural technique, patient positioning, and whether the patient is calm or upset.  Probably the best, most reliable way to measure intracranial pressure is a 24-hour monitoring of the pressure by ICP bolt.

Monday, December 7, 2015

Celebrate Gingertown in Dallas at Northpark Center

What is Gingertown?

It’s not just Santa’s little elves that are hard at work at Christmas time.  It’s architects too!  
Founded in 2006 by David M. Schwarz Architects, GINGERTOWN is a one-of-a-kind holiday initiative that brings together the leading architects, engineers, and contractors in the Dallas area with building enthusiasts – young and old – to create a town made completely of ginger bread.  
And, it’s all for a good cause... benefitting CCA Kids and our Patient Financial Assistance program!
Check out our photos from the awesome winter wonderland at Northpark Center in Dallas. Thank you DMS Architects and thank you Northpark Center! 

Friday, December 4, 2015

California Runner Inspired to Dedicate her Miles to CCA Kids

We're so excited to have another athlete - Nicole Abalde - who's dedicated her run to CCA. 

You'll remember that Amy Stone dedicated her Triathlon to CCA this summer and now we have a runner from California racking up miles for CCA Smiles!

Nicole, an adult with Goldenhar Syndrome, found out about CCA through the recent interview with Breanna Mendoza, who we invited to our Annual Family Retreat after she endured harsh bullying at her California school. We're so excited that Breanna's story inspired Nicole and now she's helping more kids attend retreat ... Together, we're widening the circle of acceptance and making the world a kinder place.

Check out Nicole's EverydayHero page and an exclusive interview with her below.

CCA: What's your name and where are you from?
NA: I'm Nicole Abalde from Pacifica, CA.

CCA: When did you start running? 
NA: This will be my first time training for a 12k or any "k" actually! Due to my recent weight gain, I’ve been trying to adapt a more healthy lifestyle and running/jogging is a simple way to integrate cardio into my life.
CCA: Running is great! And you can definitely take it at your own pace.

CCA: What’s your favorite part about running/racing? 
NA: Being outside in the fresh air!  Since this is my first time being part of a run with other people, I’m definitely looking forward to seeing all the crazy costumes. I’m also excited to see how long it will take me to finish the run!
CCA: That means, you'll have to send us a photo of your crazy costume, right?

CCA: What do you tell yourself when you want to quit? 
NA: If you hate starting over, stop giving up.  

CCA: Where did you see Breanna’s story and what was it that moved you the most? 
NA: I saw Breanna’s story on and what moved me the most was the initiative of the Children’s Craniofacial Assocation to invite her to a retreat where she could meet other children with Goldenhar.  When I was younger I always thought I was the only one with Goldenhar and it was pretty lonely!  I’m glad that the CCA exists now for children who are probably going through the same things I went through at school and at home.
CCA: And we're glad adults like you are moved to give back to kids and families just starting this journey.

CCA: What was your experience growing up? 
NA: I was painfully shy as a child in school and even with family.  I remember going to many doctor’s appointments after school with my mom and step-dad and being seen by a group of interns every time!  I’ve had about five reconstructive surgeries (my last one was in 2010).  Post-op was always difficult but I’ve always had my family around to support me.  I was never bullied but I’ve had my share of snarky comments from other kids.  Most of the time, most kids were just curious and would ask me questions.

CCA: What’s your motto? 
NA: Begin with the end in mind.  

CCA: Do you have any other hobbies or activities you really enjoy? 
NA: I enjoy streetlife photography.

CCA: What’s your advice to others who want to make the world a kinder place? 
NA: Never assume anything! Everyone is struggling with their own battle and never compare hardships and tribulations as if it were a contest to see who has the greatest struggle.

Thank you, Nicole! Go get 'em!

Thursday, December 3, 2015

#ThankfulThursday - Twitter Trophy

We are so grateful today for all of those who helped us on #GivingTuesday with ReTweeting and sharing our info... we not only won the PowerHour for Health Charities ($500 Bonus), but we also took 2nd Place in the Twitter Trophy for a boost of $350!

Thank you, Razoo, for providing such a fun and exciting platform to give and awarding bonus prizes to nonprofits on special giving days.

Thank you to everyone who participated. You make all the difference!
Congrats to our friends at the NevadaSPCA, too! Way to go!

A Love Song for CCAKids

Our friend, Larry Whitler, of AM Ocala Live made this video for our CCA Family. He's been a big supporter of our efforts to make the world a kinder place and now he's created a love song for kids with differences.

We think it will light up your holidays.
(And Three Cheers for Larry & Robin!)

Wednesday, December 2, 2015

Thank you for Giving on #GivingTuesday

Your gifts make all the difference.

Thank you so much for giving... together we raised $3640 for CCA Kids & we won the Health Charity PowerHour to receive a $500 bonus!

We couldn't accomplish our mission without you. Happy Holidays and Warmest Wishes!

Tuesday, December 1, 2015

#GivingTuesday: What will you give?

It's here! The biggest day of the year to show you care.

If you're planning on making a year-end gift, we ask you consider giving through Razoo's #GivingTuesday site today because we are eligible to win bonus prizes and a matching grant of $2500! Your gift this year is designated towards sending more kids to our Annual Family Retreat. Stay up-to-date all day long with us on social media as we try to reach our goal of $5000!

The best time to give is ANY ... but to make your gift go a little further, give during one of our two PowerHours ...

8 - 9 AM Eastern (7am CT, 6am MT, 5am PT) - $1000 for nonprofit with most DOLLARS raised
This will be one of the hardest times to win, because it will be one of the most popular, but we want to compete in this hour because it's first thing in the day and hopefully folks will do it and get it done and not forget. 

6 - 7 PM Eastern (5pm CT, 4pm MT, 3pm PT) - $500 to the HEALTH nonprofit with the most UNIQUE donors
This is a category specific prize, so only health charities are eligible. During this hour, we need the most number of donors, so small donations apply. Because this is the time Central folks are getting off work, it will also be a challenge, but a good option for our people on Pacific time. 

We sincerely thank you for a wonderful 2015! 
Happy Holidays!

During our annual four-day event, CCA Kids’ smiles never leave their faces and “can’t” is not a word you hear. At Retreat, CCA Kids’ confidence beams so brightly that even the parents in attendance breathe in the joy.

Darryl and Deena Dyson, proud parents of Teresa Joy (now age 8), describe their first moments at their first Retreat, with Deena saying, “While holding tight to TJ, I was scanning around at faces, curious about who might also be with CCA. I shortly noticed an adorable girl a few years older than my daughter jumping in the pool, splashing around, and having the time of her life… I was dumbstruck to observe this courageous and fun-loving girl was swimming with a tracheostomy!”

Though they had been having second thoughts about coming to the Retreat even just 24 hours before the family was set to fly out, Dyson continues saying, “I realized in that instant that nothing negative could come out of what we were about to experience at Retreat. This was not going to be a weekend of limits, sob stories, or holding back because of fear.”

Our Annual Family Retreat is life changing for every family member involved. Parents are able to see their children in a new light – in a setting where they excel at making friends and trying new things … something our kids often struggle with back home. Siblings who attend can make friends who “get it” – what it’s like to grow up in a family that often gets more stares than smiles. And of course, the children with facial differences in attendance find a new confidence and zeal for life that is sometimes hard to cultivate apart from such an accepting and welcoming community. The Dysons sum it up beautifully, saying, “At Retreat, we arrived at a place of joy, bravery and miracles beyond what we had ever seen. No one we encountered over the next days is living their lives as if being ‘different’ is a tragedy.” Indeed, these kids are shining examples of a fulfilling, happy life.

This year, please plan to give a gift that shines in the lives of others. Give to CCA on Giving Tuesday and change an entire family’s life. You can contribute to our campaign to raise $5000 to send more kids to our Annual Family Retreat on December 1, 2015 at