#WonderWednesday: Treacher Collins Science Fair Project

Nilah, an 11 year old from New York City did her science fair project on Treacher Collins syndrome after reading and watching the movie "Wonder." She was so in love with the character of Auggie Pullman that she wanted to learn more about his facial difference that she made it the focus of her project. Her father, Luis Pinheiro, encouraged her to not only read about it, but talk to people affected with this facial difference. He said, "I suggested, instead, that she contacted actual people (kids or adults alike) who have this syndrome and who might be willing to answer a few questions. The questions should take no more than 5 min to answer and are meant to educate her classmates (and their parents) so we can better understand and communicate with those who have TC syndrome." 

Luis and Nilah contacted CCA and executive director, Erica Mossholder, was kind enough to post to connect her with some video, CCA syndrome booklet, and people to talk to, like Jono Lancaster. Below you can see images of her at the science fair.

Looks like it was a success. Thank you Nilah for raising awareness about TCS in NYC!

Help Celebrate Craniofacial Awareness Month, Kickoff Dallas Sat., Sept. 8th

Dallas, TX -- Children's Craniofacial Association celebrates its 14th annual Craniofacial Acceptance Month this year and you can be part of the fun. CCA will host a Dallas-area picnic on September 8th. We encourage our families to host awareness events in their home cities spanning across the United States during the month of September. CCA hopes that you will share your stories and spread the word about our courageous kids through your local newspaper, TV, and radio stations.

Many kids with facial differences, empowered by the movie and New York Times-bestselling book, Wonder, eagerly want to share their “real Wonder” stories with the world. You can help them reach the goal by giving them access to your media platform. If your newspaper, television or radio station covered one of our CCA kids’ stories during the premiere of the movie “Wonder” or for last year’s Craniofacial Awareness Month, please consider following up with the family. Here is a list of links to stories that received news coverage last year https://ccakids.org/real-wonder-stories/

The Dallas-area picnic is our kickoff event signaling the beginning of the month-long celebration of
everyone in the craniofacial community. Sandy Lake Amusement park in Carrollton, TX will host the
picnic on Saturday, September 8th from 11AM - 1PM. This year a barbeque lunch will be provided. The event will feature games, a D.J., free amusement rides, and time for families to connect and meet children with craniofacial conditions.

Dallas CAM Picnic 2017

Children’s Craniofacial Association (CCA Kids), a national nonprofit headquartered in Dallas and founded in 1989, worked for over 27 years toward the vision of 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, the Annual Family Retreat & Educational Symposium, and kindness education and bullying prevention programs in middle schools across the country.

Children's Craniofacial Association, a 501(c)(3) nonprofit organization based in Dallas, Texas and founded in 1989, serves over 20,000 families per year and an additional 10,000 unaffected students in schools across the country. CCA's mission is empowering and giving 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. Learn more about at http://www.ccakids.org.

#ThankfulThursday: Roma's "Wonder" Boot Raises Awareness, Money For Two Causes

Roma Boots, a Dallas-area boot company created a boot to celebrate the premiere of the movie "Wonder" in theaters on November 17th. Together, CCA and Roma will take a step toward kindness with the sales of Roma's turquoise-hued, star-studded, children's boot. We are so very excited to be working together to raise awareness about facial differences and share in Roma's goal to #GivePovertyTheBoot.

Sam Bistrian, CEO of Roma boots, wanted to help as many children as he could through his shoe company.  He especially wanted to positively impact the poorest of children in his native country of Romania.  Bistrian combined his love of fashion, shoes, and philanthropy, starting Roma boots. Each pair of boots sold benefits a child in need of shoes or boots in Romania. One pair of boots sold, means one child somewhere in the world will receive a pair, too.

Bistrian and CCA Executive Director, Erica Mossholder met in Dallas, TX. They shared their stories of feeling different, Bistrian because he was an immigrant and Mossholder because she was born with a facial difference. Mossholder spoke to him about CCA's #ChooseKind campaign. Bistrian's flare for kindness fit well with the CCA's mission to empower people with facial differences around the country. Now, CCA and Roma boots are working together to share kindness with the world.

To help Roma meet their goals of giving shoes to children in need and spreading kindness worldwide, please purchase a pair of the Roma signature Wonder boots here.

Learn more about the Wonder boot by watching this video.

#ThankfulThursday; Alexa's Modesto, CA Dinner & Dance July 22 at 5:30PM

We are grateful this Thursday to Alexa Rast and her family. Read on to learn more about their exciting dinner and dance happening this summer.

Please join the Rast family for a dinner and dance to benefit CCA this July! The Rast family has been fundraising for CCA since 2007, after seeing the impact the Annual Family Retreat has on children and families with craniofacial conditions.

This July they are hosting a charity dinner and dance in Modesto, CA at Season's Event Center Saturday, July 22nd at 5:30PM.  We need you to recruit your friends and business associates to sign up to join in the fun. You can also contribute a silent auction, or raffle item to help benefit CCA. 

Denise Rast has come up with some amazing prizes and sponsors which will make the dinner one to remember. 

Register for the dinner here 

Seattle Rare Disease Awareness Resources

Join Us in Celebrating Face Equality Day This Friday

By Kara Jackman

Changing Faces, a nonprofit organization out of the United Kingdom that supports all people with facial differences is celebrating its first Face Equality Day. There are many activities happening online and in the UK to help raise awareness for those with facial differences. Most important of all is the publication of a  groundbreaking research study, which findings detail and quantify the perceptions of those with facial differences, or disfigurements (the word used by the Changing Face website.) The findings will be published in the weeks to come.

On Friday, May 26th, straight from the Changing Faces website, here are a bunch of ways to get involved. 

1. Paint A Butterfly To Show Your Solidarity

The logo for Changing Faces is a butterfly like the one pictured to the right. Create your own on your hand, face, or as a piece of art. Then post a picture of it on social media to raise awareness and show support. Don't forget the hashtag. #FaceEquality Day! @FaceEquality

2. Social Media 

Facebook, Instagram, Twitter and More
Post statistics from the Changing Faces site on the social media platform of your choice. Be sure to use the hashtag #FaceEquality Day! @FaceEquality and @CCAKids to recognize all the great work these nonprofits do. Here are more tips for social media engagement posted by our friends at Changing Faces

Support our Thunderclap

If you’re a Twitter user, support our Thunderclap message to go out on Face Equality Day. Let your followers know that you’re supporting face equality!

3. Sign the Face Equality Pledge

Changing Faces created a pledge for individuals, companies, organizations, and groups to sign. This pledge will signify a commitment to fair and equal treatment of all people, but especially those with facial differences.  Sign the Pledge!

Shea Freeman: Raising Awareness Through Film

By Shea Freeman

My name is Shea Freeman and I was born with Crouzon Syndrome. I've attended a couple of CCA events. Most recently, I was a speaker at an event back in 2013 in Orlando. I made a documentary about my life at the request of my doctor, Mutaz Habal. Since then, I have gone on to move to Los Angeles and currently I am developing a TV pilot that is loosely based on my life with Crouzon syndrome. 

I also created a webseries called, Mr. Funny Face, which chronicles some of my experiences living with Crouzon Syndrome. It's meant to be a funny portrayal of how I handle these situations, as I pride myself on having a good sense of humor and being able to take a joke. Here is an episode about what happens when children comment, "you're weird looking" to me. I'm sure everyone can relate to what plays out in this short episode. Enjoy!

Celebrate #RareDiseaseDay

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Today is #RareDiseaseDay. Learn more about the organization that created the day and how you can help raise awareness. Do you have a rare disease? What is it and how can you raise awareness about it in your community? 

Thankful Thursday: Volunteer Hero, Christian Scalise!

Volunteer Hero: Christian Scalise, Country Stars Central

1.     Where are you from? Chicago area.

2.    Tell me a little bit about you (1-3 sentence bio). I am the founder/CEO of Country Stars Central and Showbiz Deluxe. I love photography, travel, music, cooking, and spending time with family and friends.

3.     When did you first start Country Stars Central? I founded CSC in 2007. My first interview was with Pam Tillis and Gospel legend, the late Dottie Rambo - she has had her songs recorded by Whitney Houston and many other popular artists.

4.    What inspired you to want to do this photo series? It all began with the September Craniofacial Acceptance Month poster. The very first person to pose was Joan Rivers in July of 2014, unfortunately she passed away shortly after. I wanted to find a way to raise awareness for CCA. Through the various meetings I’ve had with countless celebrities, they have been kind enough to pose with the CCA poster. I hope it will help benefit CCA in a positive and impactful way!

5.     When did this hobby turn into a passion? I’ve always loved music and being creative. It really has always been a passion of mine since I was in my early teens. I have always been very inquisitive!   

6.    What’s your process like? What do you say to convince the artist to pose with the poster? I am a firm believer of divine intervention. I always pray about everything I do beforehand. I make every effort to kindly ask the artists I’ve either interviewed, or met to take a pic with the CCA poster. I give them a little background info on CCA and so far, no one has refused! I plan to have many more awesome pics with the CCA poster in 2017…

7.     Who are some of your favorite artists? Loretta Lynn, Céline Dion, Coldplay, Lee Ann Womack, George Jones, Stevie Nicks, and of course Cher.

8.     Do you feel like you have a special connection with any of them? Yes, I would say with Loretta Lynn, I have been privileged to get to know her and her family over the years. I met Loretta for the first time in October 2007, have interviewed her twice and have spent many great moments with her since. She’s very special to me and I am blessed to know her.  

9.    What’s your favorite photo? Okay, other than the Cher one… ;) Definitely Joan Rivers- but obviously I am so grateful for every star who has been gracious enough to pose with the poster. There’s an entire story behind the Joan Rivers meeting… she was SO genuinely interested in getting involved. Sadly, she passed away that September. Out of all the celebrities I’ve met, Joan Rivers was by far the most willing to get on board with the cause. FYI- Please visit our CCA album to see all the celebs who have taken pics with the poster here: http://tinyurl.com/jrkwv6x

10. What inspires you? Being able to share my talent with others. I love writing, interviewing artists and being creative. The children of CCA have inspired me to want to continue to raise awareness for a wonderful cause!

11. What other hobbies do you have? I have taken a newfound interest in painting, which I started doing in 2014! I painted a flower for Loretta Lynn and most recently presented a painting to Céline Dion in memory of her husband, Rene, this past June.  You can see these paintings and all my other artwork here: www.Facebook.com/ChristianScalisePaintings

12. What does a day in your life look like? At the moment, I am currently pursuing a degree in communication which has taken up every waking moment of my life…ha ha! In addition to working, and maintaining both websites and our social media sites.

13. What does kindness mean to you? Being able to make a positive difference in the lives of the other people that I meet. We are all here for a reason and a purpose.

14. What’s your motto? Seize the day! Never take no for answer, keep the faith and never lose hope!

15. Why did you decide to help out CCA? (We’re so grateful!) It all goes back to a Midwest (Wisconsin) connection with my buddies Jill Patterson and her son, Robbie. Initially our websites ran advertisements for CCA in an effort to help raise awareness, and funds during Craniofacial Acceptance Month. I have been blessed to meet some of the younger CCA kids, which only doubled my desire to spread the word about CCA. The rest is history… It really is a small world!

16. Five things on your list of things to do before you die: I don’t want to think about that yet. I trust that the Lord has a lot more for me to do before I leave this world. I hope to continue to spread the message about CCA in the years to come. I would LOVE to have Céline Dion be the next celebrity to take a photo with the CCA poster! God bless you all. Thank you for taking the time to speak with me! PLEASE be sure to LIKE us on Facebook too! www.Facebook.com/CountryStarsCentral and www.Facebook.com/ShowbizDeluxe

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 huffpost.com 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!

Ross Mathews, The More You Know

More and more folks are talking about bullying prevention and how to make our kids happier, healthier, and safer.

Check out comedian Ross Mathews and his videos on bullying, recently launched by Comcast & NBCUniversal for The More You Know.

video link

video link 

The More You Know features PSAs on several topics, including education and diversity.

We are so happy to see Ross spreading the #ChooseKind message from his platform - thank you, Ross!

5 Things Not to Say about Someone's Weight

CCA wants to make the world a kinder place.

One way we accomplish that mission is to prevent and end bullying, teasing, and hurtful remarks, in social spaces and online. Unfortunately, many of our CCA Alums & Adults are familiar with bullying tactics and have been targeted by classmates, peers, and even adults. To help fight back against bullying, CCA is running a series of personal posts about how our Alums & Adults have handled bullying and teasing situations. Plus, we'll be posting resources from experts about how to promote safe and supportive relationships. Stay tuned this week for informative, inspiring posts about changing the way we react to others' comments - bullying, teasing, and even "harmless" remarks.

Some folks just have to comment on your looks every time they see you.
Maybe it's your face. Or your outfit. Or your smile. Or even your shoes.
Regardless of what has piqued their interest, you know they are looking because they're commenting. And while it is nice to receive a compliment, sometimes even well-meaning remarks bring up anxiety to those of us who already feel like a person on display.

Blogger Meg has experienced her share of frustrating comments, too, specifically about her weight. It can be exhausting to constantly answer others' questions, so keep Meg's tips in mind next time you - or your grandma - want to make a comment about another person's appearance. Whether you're curvy or angular, chubby or skinny, dark or light, tall or short... we're all people inhabiting the body we were born with. And we all want to be accepted for who we are, not what we look like.

5 Things NOT to Say to Someone Who's Thin
by Meg Storie

1. "You probably can eat anything you want and not gain a pound!"

No, I can't actually! I have Gastro-Esophageal Reflux Disease (GERD). Any food high in fat or with milk upsets my stomach and sometimes triggers heartburn. I don't have fast food very often; it's a treat when I do. I love my frozen yogurt sometimes. And because of GERD, I must eat early, hours before bedtime.

2. "You look like you are ten!"

Let's be honest: I do not look like I'm ten. This statement is too quick of a reaction and you should have thought before you spoke. In my early twenties, this is the "compliment" I get mostly, but even though we universally accept that everyone wants to look younger, no one wants to be infantilized. I'm a woman, not a child.

3. "How much do you weigh? You must be only X pounds!"

This is not the Fair and I didn't just give you three chances to win a prize. You wouldn’t ask an overweight person how much they weigh, so you certainly don’t ask someone who’s underweight.

4. "Do you eat?

What a silly question! I wouldn't be here if I didn't! The truth is, I love to eat. I thoroughly enjoy discovering new recipes on apps, dark chocolate, and eating David's heart healthy dinners! Eating is something I enjoy, but I have to mind my restrictions for my health.

5. “You need to put some weight on you.”

This statement assumes so much about me that is really unfair. I have been small all my life, so barring any physical changes to my body's chemistry, I'll be staying this way. For many underweight people, it is just as hard to gain weight as it is for an overweight person to lose weight.

---
In the end, making the world a kinder place is about shifting our communication patterns from commenting on people's looks to connecting with their spirit. There are many ways to start a conversation or compliment someone.

If you're guilty of saying some of these things out of habit, why not brainstorm a list of creative things to say instead? We came up with 5 Alternatives to get you started...

1. Hi, Ginny! It is so great to see you! 
2. I have missed you, Maggie! Where should we get lunch?
3. Corbin, thanks for making it to the meeting! We're glad you're on our team.
4. You're such an inspiration, Jake! When did you starting running 5Ks?
5. Kelly, I have been eating way too much red meat lately. Do you know any good fish recipes you'd like to share?

Can you think of more? Share them in the comments!

Paint a #BluePinky to End Bullying

During the month of March, CCA encourages our friends and followers to snap a picture of your nails painted with a blue pinky. We'll share the best every Monday on Twitter and Facebook for ‪#‎ManiMonday‬.

The blue pinky campaign is sponsored by Secret and their goal is to end bullying. We support this mission! Jump on board by posting your photos of blue pinkies... let's show them how diverse our hands and hearts are!

Make sure you tag Children's Craniofacial Association in your pictures so that we can share them!

Happy painting!

Coming Soon... September is Craniofacial Acceptance Month!

Thank you Scott Clarke for the beautiful poem!

Gear Up for Craniofacial Acceptance Month here!

Imagine a World Without Bullies!

Thank you Scott Clarke for writing this beautiful poem dedicated to CCA Kids!

http://www.ccakids.org/wonder.html

Media Monday: Philadelphia Family Magazine

Check out Danny Pfef and Connor Loescher, who made the cover of Philadelphia Family magazine, along with our Ambassadog, Lentil!

Inside the magazine is a wonderful article, "Facing Adversity," that highlights the awesome work that Lindsay Condefer (Lentil's mama) is doing for CCA.

Three cheers for volunteers! 

Media Monday: Scott Guzzo

Evansville man encourages students to "choose kind," build friendships with those who are different 

Students take lesson to heart after reading 'Wonder'

By John Martin 

Thursday, October 10, 2013  

EVANSVILLE — Scott Guzzo’s list of physical deformities is lengthy, but he told Highland Elementary School pupilsThursday being different is easier with a can-do spirit and with family and friends who cherish him for who he is. 

“It’s hard to blend in when you were born to stand out,” the 30-year-old said. His words came from an iTouch device. It’s the only way that Guzzo, who has a rare condition called Crane-Heise Syndrome, can speak clearly. 

“Don’t be afraid to be friends with someone who looks different,” Guzzo said later. 

It’s a lesson that Highland fourth-graders in Tina Thatch’s and Merna Peden’s classrooms are taking to heart. They recently read “Wonder,” a 2012 children’s novel about a child with a facial deformity, how the child deals with it and how other children react. 

The book by R.J. Palacio reached No. 1 on The New York Times Best Seller list. Its message is summed up in the phrase “choose kind,” and Highland pupils were clearly moved by the story.

“I’ve never seen kids react to a book the way they did to ‘Wonder,’” Thatch said. “It’s life-changing.” 

Guzzo’s visit on Thursday followed up on the book. He seemed as excited to see Highland pupils as they were to see him. Guzzo attended Highland and Thompkins Middle School before graduating from Central High School in 2004. He proudly wears his class ring on his left hand. “Go, Bears,” he told the Highland pupils, eliciting a laugh. 

Paula Guzzo, Scott’s mother, said Scott is the only person in the world with Crane-Heise Syndrome; at one time, there were as many as 11. In addition to facial deformities and inability to speak, Guzzo does not see or hear well. He is fed through a feeding tube, and he requires continuous care. He has a curved spine and pressure on his brain. His heart and kidney functions, though, are in good shape. 

While Guzzo was a student in Evansville many years ago, peers and even some of their parents had questions and concerns, Paula Guzzo said. But those dissipated, and friendships were formed. During Highland’s talent show one year, Guzzo and a friend did a karate demonstration. Highland pupils on Thursday were shown images of Guzzo with friends at Central’s prom and other events. 

Guzzo today takes pride in his volunteer work at Central Library, where he sorts compact discs that have been returned by library patrons, and at the Ford Center, where he scans tickets. He’ll be doing that Saturday night before the Rascal Flatts concert, one of his favorite groups. 

Guzzo enjoys movies and music, and he has a close relationship with 25-year-old Aaron Guzzo, a screenwriter living in Los Angeles, who he affectionately called “my little brother.” 

Despite the distance, they speak regularly by phone and do video chats.

“He’s a party looking for a place to happen,” Paula Guzzo said of Scott.
Highland pupils listened intently as Paula Guzzo and her husband Bob talked about their son and the message behind “Wonder.” The 57 fourth-graders gathered around Guzzo when the presentation was over to say hello and share fist bumps, Guzzo’s favorite greeting. 

Fourth-grader Claudia Emig said “Wonder” was “a really touching book, and it made you realize being different isn’t always easy, and you should always treat people like everyone else.” 

Claudia and classmate Gavin Kelley also talked about how much they enjoyed Thursday’s classroom visit. 

“It was awesome,” Gavin said. “I was telling my friend it was a really cool. We were like, ‘We don’t want to go home today.’” 

More information:
Paula Guzzo is on the National Board of Directors for the National Craniofacial Association, and she just began a series of blogs about her son. The website is www.ccakidsblog.org
The Children’s Craniofacial Association Wonder Page is www.ccakids.com/wonder.html
This link is to CCA’s anti-bullying video, in which Guzzo appears: vimeo.com/49959214
Wonder-related Links, Blogs, Resources for teachers: www.ccakids.com/wonder-links.html

This story originally appeared in the Evansville Courier & Press on October 10, 2013.