Saturday, May 27, 2017

Boston Children's Hospital Hosts 1st Cleft Lip and Palate Parent Support Group








The Cleft and Craniofacial Center is so excited to announce our first "Children with Cleft Lip & Palate Parent Support Group" meeting on Saturday, June 3rd, 4:30-6:30pm at our Waltham location!
Join other cleft lip & palate families for this free event as we build relationships, encourage one another, and tackle difficult topics. 
RSVP to Amanda.Lassiter@childrens.harvard.edu or 617-919-6177. We hope to see you there!

Friday, May 26, 2017

Family Spotlight: The Morales



We knew that 2017 was going to be a big surgery year for Sydney and our family, so we decided that we would have an amazing family vacation in 2016.  We were able to go on a 7-day cruise to the Caribbean during the summer.  We visited Grand Turk Island, Puerto Rico, the Dominican Republic, and St. Thomas.  
We hung out at the amazing beaches on Grand Turk Island and St. Thomas. 

We are Puerto Rican and had an opportunity to visit family while our ship docked on the lovely island of Puerto Rico. 

When we docked in the Dominican Republic, Sydney and the family, got to swim with the dolphins. As you can see Sydney loved it.     

In July, Joel and I found out that we were pregnant. We told the kids in September. Our  new baby girl, Jolie Christine Morales, arrived on February 14, 2017. Sydney is a great big sister to Jolie. 

We are a large family Kayla age 15, Janice 12, Nathen 10, and Sydney is 9 years old.   Their updates are below.

This summer Sydney attended Camp Smile at Shriners Children’s Hospital in Chicago, IL.  It was a 1-week intensive, speech therapy camp.  Channel 9 WGN highlighted the camp and a special application that they used with the campers.  Sydney stole the show! See video here.




This year is a big one for Sydney with 3 tentative surgeries scheduled.  She will be having her alevolar bone graft on July 13th at Shriner’s Children’s Hospital in Chicago. She may also will undergo facial reconstruction and get a magnet inserted for her BAHA sometime this year, too. Finally, Sydney was beyond excited to become a big sister in February. 


Nathen writes, "I had a birthday this year. I made double digits. I'm excited about my dad and I being the only men to my new baby sister."

Janice is our family clown. She is beyond funny.  In September, she went to her first comedy show, she saw internet sensation Maranda Sings perform.  Janice also had the rare opportunity to Facetime with Major League Baseball player, Javier Baez (#9 for Chicago Cubs). She was hysterical when he said "Hello."



Kayla is a sophomore in high school. She completed her freshman year as an honor roll student. She is working hard to continue with her excellent grades.  After 3 long years Kayla's braces came off in January!  Finally, she is very proud to be a big sister again to the newest addition to the family.






*Important Retreat Information* Sign-Up Deadlines Fast Approaching



Here is a message from Annie Reeves about some very important upcoming Retreat Deadlines. You may have received these via email. Here they are again...in case you missed it.  -Kara J.

Educational Symposium Childcare Sign Up 

Educational Symposium. Once again, this will be taking place on Thursday, June 29th, beginning at 8:00am. Please click on the link below to sign up for the hours your child/children will be needing childcare. The kids will be split up into two groups: ages 0-3/ages 4 and up.
May 31st: Deadline to sign up for child care during the Educational Symposium and the Symposium sessions you and your family will be attending. (Link for the Symposium sessions is below) https://docs.google.com/forms/ d/1IFjw2VMgYhf_621_ f0DH7BaoiJrZGf3--HYKxaggAQc/ edit?ts=58bec626  (Symposium) 
Wonder Song Performance Casting Call 
We have some exciting news to share with you! Longtime CCA Retreat attendee and performing artists, Bianca Moon, has teamed up with Director Edward Edwards and Ed O’Neill (Modern Family, Finding Dory) to record an incredible song, aptly titled "The Wonder Song." This song is inspired not only by the book and film, but more importantly it is a love song to CCA Kids!
Bianca will be performing this song during the Dinner/Dance on Saturday, July 1st, and we need your help! We are looking for Retreat Attendees to be participants to sing and perform this song with Bianca! If you are interested, you will be sent the lyrics and a recording of the song. You will be responsible for learning the song prior to the retreat. You will also be required to attend a performance rehearsal during Retreat. The times are 4:30pm-5:30pm on Thursday, June 29th and 10:15am-12:15pm on Saturday, July 1st.  You can sign up by emailing me directly or by signing up on the Retreat Events/Meal sign-up below.

Photo Submission

May 20th: Deadline to submit picture for our retreat program. This can be a family picture, picture of your child/children or an individual picture.

    Retreat Event and Meals 

June 5th: Deadline to complete the Retreat Event/Meals Sign-Up Sheets (Links is below)

   Book Your Hotel Room 

June 8th: Last day to book your room at CCAs discounted rate. Here is the online booking link and our discounted rate is $149 per night, plus tax.https://resweb.passkey.com/go/ 27thAnnualCHERsFamilyRetreat             

DJ Song Requests for Dinner/Dance Night
Also, in case you missed it or aren’t on Facebook, I did make a post this morning requesting songs for the DJ to play during our dinner/dance. If you have some songs you would like to hear, either comment on Facebook or email me. J Our DJ will do the best he can to play as many songs as possible.

Thanks and I will be reaching out to all of you soon, 
   Annie Reeves

Thursday, May 25, 2017

#ThankfulThursday: Celebrate Face Equality Day on Friday, May 26th with Changing Faces




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 here!

Wednesday, May 24, 2017

Celebrate #WonderWednesday with the Dankelsons


Happy #WonderWednesday  Last week, Dede, Jacob, and Pete Dankelson visited the Jonathan Burr School in Chicago to share their family's story and to remind students to Always Choose Kind. 

CCA offers so many great curriculum and program offerings around the book Wonder. Learn more by visiting the 'Wonder' section of the CCA website . If you are a teacher, librarian, or group leader, we have everything you need to facilitate conversation and build activities around R. J. Palacio's novel. 

Don't forget...the movie version of the book is coming out soon, too. Read it now and be ready when it comes to a theater near you!




#ChooseKind Assembly at Jonathan Burr School in Chicago
Photo Credit: Dede Dankelson


Tuesday, May 23, 2017

CCA Kids Car Raffle - Tickets on Sale Now


Children's Craniofacial Association is holding a car raffle and you could win your choice of a Jeep Wrangler, a Dodge Ram, or a Chrysler Pacifica! Only 1,000 tickets will be sold, so scroll down to the bottom of the page and BUY YOURS NOW! 

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!

Monday, May 22, 2017

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!

Thursday, May 18, 2017

Spending #ThankfulThursday with the White Family!



Today we are celebrating a very #ThankfulThursday with the White family. Enjoy this photo slide show set to beautiful music. 




Monday, May 15, 2017

CHOP Patients Enjoy Day At the Spa


Photo Credit: Justin Udo, (http://www.Philadelphia.cbslocal.com)

Here's a great story about a salon in Philadelphia, PA that provides a day services to girls receiving treatment at Children's Hospital of Philadelphia Craniofacial Center. Hair, makeup, and some fun spa stuff to take home. Many girls are now ready for prom, while other will look stunning "just because." This yearly event is a fabulous way to bring the beauty that resides inside, through to the surface.




Thursday, May 11, 2017

#ThankfulThursday: Rare on the Road, Increasing Information & Advocacy


Here at CCA we are always grateful for opportunities to connect and learn from one another. This #ThankfulThursday, we present to you Rare on the Road. 

Global Genes and the Every Life Foundation bring awareness and advocacy training on the road in this innovative three-city event. The flyer below explains more about what they hope to accomplish with patients and caregivers. An agenda for each stop outlines the general scope of the day's events in Atlanta, GA, Kansas City, MO, and Portland, OR. This looks to be a wonderful opportunity for everyone to learn the power of their personal stories. See you on the road!






Wednesday, May 10, 2017

2nd Annual 'Wonder' Picnic in Chula Vista, CA May 31st 10:30AM


Video: "Smile with Simon" by Patricia Simon


Patricia Ann Simon, R.N. wrote this song about a girl and a bird with cleft lip and palate. It's all about celebrating our differences, "smiling with Simon" to be kind and courageous. This courage makes us beautiful. The animation and slideshow of pictures is nothing short of inspiring. I hope you enjoy the video, buy the book, and check out Patricia's website filled with resources, animals, and lots of smiles.

Thanks Patricia! You rock!



Monday, May 8, 2017

A Few More Words About First Impressions

By Christine Clinton 

Christine Clinton, CCA Adult, author of a memoir about living with Apert Syndrome, posts a follow up to her first blog, First Impressions.


I thought about writing a second part to the blog on first impressions, because I felt it was important to explain my own feelings on first impressions. I am a pretty decent judge of character, and I can usually gauge whether or not someone is a caring, compassionate, gentle, kind, loving person, or not. It usually takes me more than one time of being in their company to figure out whether or not we will be lifelong friends. Building solid friendships is important to me, and I think that is where the first impression is most important.

When I meet someone for the first time, I never know what they think of me, or how they feel about me, and that is OK. I don’t always need to know how others feel and think about me, but I can usually tell by the way they act around me. Sometimes I notice there is a certain comfort level, and sometimes I sense a bit of discomfort, too.

It is easier for me to have an idea how an adult feels about me rather than a child. Children are innocent, and all they want is to be loved. Adults tend to be more vocal with their feelings (at times), and so more often than not, I either feel super comfortable with them, or not so comfortable with them. I have come to realize that as I’m getting older, while in a sense it matters what others feel about me and think about me is important, in reality, it’s not important. How I feel about myself should carry a little more weight than how others feel about me. Once a person meets me, whether it be for the first time or the tenth time, after we go our separate ways, the ball is in their court. If they like me and want to get to know me, that is great. But if not, that is fine too. I am never going to force anyone to be my friend or to like me if they really don’t want to be.

In conclusion, I think first impressions are so very important-both for the person with the facial or physical difference, and for the people meeting them. That isn’t to say anyone needs to be ‘warned’ about me, but I always like to have a general idea of what others think of me. I don’t always verbally know what others think, but their body language does speak volumes. While like I said it doesn’t matter what others think about me, I do think that first impressions are very important. It gives a glimpse of where I stand with people, whether or not I will forever enjoy a lifelong friendship with them or not.

Saturday, May 6, 2017

Fun Quiz Time: Do you 'Know Your Diseases?'




Do you know your diseases and common illnesses? Think you are as smart as the doctors and nurses? Try your hand at this Know Your Diseases quiz created by our friends at Gap Medics in the United Kingdom. Gap Medics is "the world's leading provider of hospital work experience placements for school and university students."

Thanks Gap Medics for the fun, informative way to learn a bit more about a variety of common medical conditions. 

Thursday, May 4, 2017

#ThankfulThursday: Alexa's Charity Dinner and Dance in Modesto, California


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. 

Wednesday, May 3, 2017

Reminder *Tomorrow Night* Charmed by Charity at Alex + Ani Stonebriar

ALEX AND ANI ... for CCA!

You're invited to shop with us on Thursday, May 4, 2017 for a Charmed by Charity Soiree at the Stonebriar Centre, 2601 Preston Rd #1053, Frisco, TX! 15% of Everything purchased during this event will be donated to CCA!

Phone orders are accepted for this event! 

Just in time to pick out something special for Mom (Mother's Day is May 14) ... or yourself ... ALEX AND ANI is hosting a charity shopping event for CCA Kids!
ALEX AND ANI creates meaningful, eco-conscious jewelry and accessories to positively empower and connect humanity. ALEX AND ANI shares a passion for the wellbeing of our planet, our communities, and our individual paths. ALEX AND ANI products are proudly designed and crafted in America and made with love...
Please join us on Thursday, May 4, from 5pm - 8pm!

#WonderWednesday: Jacob Tremblay in #ChooseKind Gear



A few months ago Jacob Tremblay posted this photo of himself wearing a #ChooseKind hoodie. Tremblay will portray Auggie Pullman in the movie version of R.J. Palacio's book Wonder, set to open in theaters nationwide in November 2017.

We are glad that Jacob supports our appreciation for kindness and comfortable attire while at work and play.


Monday, May 1, 2017

Charmed By Charity In Frisco, Texas

ALEX AND ANI ... for CCA!

You're invited to shop with us on Thursday, May 4, 2017 for a Charmed by Charity Soiree at the Stonebriar Centre, 2601 Preston Rd #1053, Frisco, TX! 15% of Everything purchased during this event will be donated to CCA!

Just in time to pick out something special for Mom (Mother's Day is May 14) ... or yourself ... ALEX AND ANI is hosting a charity shopping event for CCA Kids!
ALEX AND ANI creates meaningful, eco-conscious jewelry and accessories to positively empower and connect humanity. ALEX AND ANI shares a passion for the wellbeing of our planet, our communities, and our individual paths. ALEX AND ANI products are proudly designed and crafted in America and made with love...
Please join us on Thursday, May 4, from 5pm - 8pm!