Thursday, June 22, 2017

Modesto, CA Alexa's Craniofacial Awareness Charity & Dance July 22nd at 5:30PM

If you live in, or near, Modesto, CA, save the date for Alexa's Craniofacial Awareness Charity Dinner. The event will take place on July 22nd at 5:30PM. There will be a silent auctions and new sponsors are being announced daily. Head over to the event website to learn more. 



Wednesday, June 21, 2017

Take Surveys, Raise Funds For CCA






Want to volunteer, but are busy with work, the commute, and the kids? No problem! There is a way for you to volunteer from anywhere at any time. Give back to CCA on your schedule by taking part in a  Opinions for Good survey. 

CCA has partnered with Opinions for Good, which delivers surveys to your computer to complete. Compensation for your time can be donated, in part or completely, to CCA.  Join other members from around the United States and be part of the "world's most innovative army of volunteers." All your help will benefit CCA in immeasurable ways. Every little bit counts. Participation is crucial for effective fundraising. 


#WonderWednesday: 'Wonder' Movie Trailer and A Few Words From CCA


Children’s Craniofacial Association is a proud supporter of the forthcoming film, Wonder. We are pleased and grateful that both the author of the book and movie production team consulted families, studied and worked with craniofacial children and formed connections with families on deep and meaningful levels. 

CCA is proud to endorse both the movie and the actors for their hard work to get the story right. We are so thrilled they created this film that tells our story with dignity, stunning accuracy, warmth, and sincerity.


Thursday, June 15, 2017

Family Spotlight: Wayne Family


This month's family spotlight focuses on the Wayne Family of Coatesville, Pennsylvania. Jennifer Wayne, mother of four kids, has her three youngest children living with her in, as she aptly puts it, "a small house full of craziness and love," which is their own "wonderful corner of the earth." 

Jennifer writes, "My parents (the kids' grandparents, a.k.a "Nan" and "Popsey") are incredibly present and involved in all of our lives. They live only a few minutes away.  I could not be doing this without their endless love and tireless support.  We live about an hour away from the most incredible hospital in the world:  CHOP! That is where we were introduced to CCA when Sammi was three by the one and only sweet, welcoming, sensitive, thoughtful, connected and concerned Patient Liaison, Diana Sweeney.  We are so excited to be heading to our sixth CCA Family Retreat in just a couple of weeks!"

The Wayne kids wrote their own updates. so keep reading to hear from each of these beautiful children.


Sammi (Today) 
Sammi,(Before 2008 Surgery)




















Hi.  My name is Sammi.  I am 14 years old and a Distinguished Honor Roll student.  I have Crouzon Syndrome and over the past year I have successfully worn my second halo (to move my mid face and forehead) and had a rhinoplasty (to straighten my nose and help me breathe better).  As of December 29, 2016 (the nose surgery) I am officially done with surgeries!  It has been a rocky road having all the procedures and even daily life, but I had to go through rough times to be where I am today.  I’m more confident and a happier person now and I can’t believe it’s all behind me!  Keep pushing if you are going through hard times, because it’s all worth it in the end!  Also, I recently was able to stop wearing my back brace after wearing it for three years for scoliosis and it helped me so much that I don’t have to have back surgery.  In my free time, I love to read and watch YouTube.  I also play in the school band and I am part of the Yearbook Committee.  I can’t wait for the CCA Retreat this summer.  Now that all of my procedures are over and I’ve learned so much from those experiences, I hope to one day help others with craniofacial differences! 

Cory and Zooey


My name is Cory.  I’m Samantha’s older brother and I’m 26 years old.  I have been living in Philadelphia while pursuing a science degree for a few years now and have been enjoying every moment of it.  I spend most of my free time with my five year old dog, Zoey, or travelling to any interesting locations I can get to. Besides my interest in space science, I love to bike and run as often as possible.  Getting outside and enjoying the outdoors is something I think everyone should get a chance to do regularly.  One day, I hope to be able to discover new and incredible things both on earth and outside our solar system.


I am Joey, son of Jennifer and brother of Cory, Sammi and Tommy Wayne.  Some things I enjoy are Boy Scouts, being outdoors and fixing and making things.  I enjoy hanging out with my friends.  We have known each other for at least six years.  We all have a lot in common and we love joking and laughing.  We all love to draw.  I am in the 6th grade and I love it!  I have gotten Distinguished Honor Roll for the first two marking periods.  I thoroughly enjoy using tools.  Just recently I made a sling shot out of wood from a fallen branch.



Joey and Tommy

My name is Tommy.  I am the youngest of four kids and in the 6th grade.  I am a Distinguished Honor Roll student and I thoroughly enjoy my time with friends.  My favorite academic class is math, but I really love Gym.  I am pretty intelligent and love athletics.  Lacrosse, football, and basketball are my favorite sports.  I also like swimming, driving golf balls, and shooting.  I want to be a Mathematician in the future.





Thank you, Wayne Family, for this awesome update and sharing your story with us. CCA is committed to fostering connections between our craniofacial families near and far. If you'd like to network with someone in your area, with a similar diagnosis, or in a specific age range, please reach out to us at Contact CCA@ CCAkids . com (no spaces!). 

#ThankfulThursday: Overview Talking to Your Child About Upcoming Surgery



Summer is upon us. For all of us this means more time in the sun, but for some of our kids this means time for surgery. Summer provides ample time to recover without missing any school. This time of year is a great time for families to review one of CCA's new overviews called "Talking To Your Child About Upcoming Surgery" You can also view images of the document below.

Additional overviews on craniofacial conditions and other useful medical information can be found at the CCA Kids website. All of these overviews are written by expert physicians and clinicians, featuring top-quality information about well over a dozen topics.

We are grateful to all those who contributed to these publications to help our families stay informed.





-By Kara Jackman 


Wednesday, June 14, 2017

#WonderWednesday: CCA Brings Wonder to Your School or Group

Happy #WonderWednesday everyone!

CCA can help you bring Wonder to your school. We have all the resources, curriculum, and fun additional swag for the kids to keep everyone interested and engaged about the important message delivered through R.J. Palacio's New York Time best-selling book. Learn more about these resources, curriculum packs, and more at our Wonder 4 Schools webpage. 

Check out the impact CCA's programming had in this short video.

Monday, June 12, 2017

On Seeing A Baby With An Unrepaired Cleft Lip


By Ashley Barbour


Ashley Barbour was born with a complete bilateral cleft lip and palate.  She works as a special education teacher and has recently started CleftLove, a Facebook page created to share her experiences growing up and living life as a cleft-affected woman.  

A couple of years ago while I was putting oranges in my shopping cart at Meijer, I looked over and saw a baby with an unrepaired cleft. Despite being in my late 20's, I had never seen an unrepaired cleft in person. I knew what my baby pictures looked like and I had seen others, but something about seeing this little one with my own eyes, impacted me in the most significant way. 

Amy Barbour


I experienced a flood of emotion. I hadn't had this thought consciously before, but I realized there was a part of me before that was almost nervous to see an unrepaired cleft. I was scared that I might be disgusted and what would that mean about how I see myself?

In that fruit section of the grocery store, I realized I had never seen anything more beautiful or perfect than this baby in all of my life. I went over, tears in my eyes, to tell the mother and grandmother how absolutely perfect this little one was.

From birth, and throughout our lives, those of us who are cleft-affected experience so many less than nice gazes: medical staff looking to fix us, strangers trying to figure out just what it is that looks different, and cruel kids on the playground pushing their nose flat with their pointer finger.

The moment I saw this baby boy, I felt compelled to look at him with pure, loving eyes, the way all babies and people should be seen. I thought that just maybe I could transmit enough positive energy that I might be able to counteract some of the negativity he has, and will, experience throughout his life.

Through my tears, I talked with his family and I could feel the hope that filled them as we spoke. In that moment I realized I might be able to offer something important to this community: the knowledge that your little ones will grow up and will be okay.  From this time on, I felt something growing inside of me, a need to share with families, a need to give a voice to those of us who are cleft-affected. 


For me, it was next to the apples on that sunny Saturday afternoon that I was finally able to see what has always been there: a beauty and perfection in myself. 

Saturday, June 10, 2017

CCA Car Raffle *Buy Your Tickets Today*











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! 

Thursday, June 8, 2017

#ThankfulThursday: 2nd Annual Wonder Picnic in California




Here are some great photos from the second annual Wonder Picnic in Chula Vista, CA. Families came together for games, food, and fun to celebrate Wonder and some wondrous kids. Thank you Dorina Watkins for this great event. These photos of these kindness warriors are a testament to what could be possible if we all treated each other with respect and an open heart. 




Wednesday, June 7, 2017

Wonder Movie Trailer Released *Video Inside*




The movie trailer for "Wonder," the movie based on R.J. Palacio's novel, about a child born with a facial difference, was released two weeks ago. I am sure most of your watched and shared the video many times over via social media. If you have not seen it, check out the trailer below. 

The movie features Julia Roberts, Owen Wilson, and Jacob Tremblay, playing Auggie Pullman, who goes to school for the first time after being homeschooled. We travel with Auggie and his family as he negotiates a world filled with everything from relentless bullies to inspiring teachers. 


Monday, June 5, 2017

Bullying and Craniofacial Disorders



By Marie Miguel

Marie Miguel is an avid internet researcher. She is fueled by her determination to answer the many questions she hasn't been able to find the answer to anywhere else. When she finds these answers she likes to spread the knowledge to others seeking help. She is always looking for outlets to share her information, therefore she occasionally has her content published on different websites and blogs, like Women for One, Finer Minds and Sisterhood Agenda. 




If you are an expectant parent or the parent of a child with a facial difference, you know how scary different procedures and surgeries can be for you and your child. You seek answers when you do not know what to do, and for many, it can be overwhelming.

Someone with a craniofacial disorder has face and/or head abnormalities. Several syndromes are within this umbrella of disorders, including the following:

   Facial cleft, or face cleft or palate;
   Types of dysplasia;
   Microtia/Atresia;
   Miller Syndrome;
   Pierre Robin Sequence;
   And more common, and rare forms, of craniofacial disorders.

While each craniofacial disorder has its own characteristics, one issue that could plaque individuals with these disorders is bullying. Whether you are being directly bullied, or a loved one with a craniofacial disorder is being bullied, it can have damaging effects that last your entire life. Here are some tips to teach your children (and adults) to not engage in bullying behaviors towards those with craniofacial disorders.

Have a conversation with your child.
If your child comes home and tells you about an instance of bullying, calmly ask him or her the details of the situation. Answer any questions and issues with kindness. If your child asks for specifics, try to return the favor with details. If your child mocks someone or engages in other negative behaviors, refrain from telling them to not do that behavior. Instead, explain why that behavior could hurt another child or adult. Engaging in two-way conversations instead of brushing issues under the rug is beneficial because you are able to help change the conversation.

Take action if someone else is bullying.
If your child tells you that he or she witnessed a bullying event, encourage your child to tell someone in charge, or other authority figure. If the event takes place at school, the person to talk to could be a teacher or principal. Tell your child to use the buddy system to prevent bullying of others from being bullied. Have a friend back them up when confronting the bully. Encourage your child to remain calm if they witness bullying. Overreacting or becoming combative will only make things worse.

Change their behaviors.
If your child is the bully, tell them that you will help them change their negative behaviors into more positive ones. If you have a younger child, he or she may not know that they are actually bullying another child. Let them know that is not acceptable behavior. Show and tell them what behaviors are acceptable.

If your child is older and displaying aggressive behavior (hitting, punching, name calling, gossiping or something else), you may want to seek therapy for your child from a licensed mental health professional. Bullying takes on many different characteristics, and a professional can help improve a child’s behavioral patterns and provide solutions.

Teach your children that everyone is unique and beautiful.
All of us are different in our own ways. Some differences are just more visible that others. Teaching your children respect and that uniqueness is what makes a person special will help children realize that they should treat others how they want to be treated.

If you need anti-bullying advice, seek out a licensed professional to talk with you about your situation. This advice can be found online. Good news: you do not have to leave your couch!  Talk with someone at your convenience — anywhere you are —at www.betterhelp.com.

Check out other useful resources below:

Resources

^ www.betterhelp.com. Accessed March 29, 2017.

^ Syndromes. Children’s Craniofacial Association. http://www.ccakids.com/syndromes.html. Accessed March 29, 2017.

^ Why Perspective Matters When Parenting a Child With a Craniofacial Disorder. Liz Anderson. https://themighty.com/2016/10/what-perspective-means-when-your-child-has-a-craniofacial-disorder/. Accessed March 29, 2017.

^ Five Ways to Bully-Proof Your Kid. KidsHealth. http://kidshealth.org/en/parents/bully-proof.html. Accessed March 29, 2017.


^ What To Do If Your Child Is A Bully. Stomp Out Bullying. http://www.stompoutbullying.org/index.php/information-and-resources/parents-page/what-do-if-your-child-bully/. Accessed March 29, 2017.

Wednesday, May 31, 2017

#WonderWednesday: Casting Call for 'Wonder Song' & Music Video at Retreat


We are getting all geared up for retreat. Here is an exciting opportunity for kids to be part of a music video. 



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 exact time may vary depending on the number of participants, but the block is planned for 11:00am-4:00pm on Friday, June 30th. (Note: This rehearsal is during the Water Mine Park off-site activity and you must be attending the 27th Annual Family Retreat & Educational Symposium.)
Please contact us if you want to participate, sign up for Retreat, or have any questions at all. This is a fun and unique opportunity for our kids and sibs who enjoy music, singing, and performing! 

Tuesday, May 30, 2017

Retreat Deadlines




Here are some important deadlines to keep in mind before as we head into the retreat month of June. Thank you to Annie Reeves for sending these along to us. 


*Tomorrow* 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)

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

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        

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.