Monday, December 26, 2016

Deadline For Retreat Scholarship: December 31st !

The deadline to apply for our a retreat scholarship is right around the corner. December 31st is just days away.

The 2017 CCA Annual Family Retreat and Educational Symposium takes place from Thursday, June 29th through Sunday, July 2nd, in Reston, VA, and we will be staying at the Hyatt Regency Reston. They have given us a discounted rate for our group. Please join us for an educational symposium, family night, dinner/dance, and much more! 

If you would like to apply for a scholarship or register for the retreat, please email CCA's Program Director, Annie Reeves. [email protected] 

Please register by May 1st to get our early-bird registration special of $100 per family. Registration will increase to $125 after this date and the LAST day to register will be May 15th. 

The deadline to apply for a retreat scholarship is December 31st. We hope to see you there!

Friday, December 23, 2016

Annual Appeal: The Watkins Family

By Dorina Watkins

Jordan was always a happy baby and child.  However, as a mother my intuition told me something “was not right.”   When Jordan was born he was a whopping 8 lb. 6 oz. healthy, baby boy.  Or so, we thought.  Within 24 hours of being born he was rushed to the NICU for vomiting and at the time there was concern of a possible infection.  There were no signs of infection, but he remained there in the NICU for a week to finish the course of antibiotics.

That first year as new parents was BLISS. Yes, there was some projectile vomiting and the occasional trip to the pediatrician for respiratory infections, but those occasional trips to the pediatrician became more frequent as he got older.  Jordan was a mouth breather and his pediatrician was concerned that this contributed to the frequent respiratory infections and worsening seasonal allergies. She prescribed allergy medication and a nebulizer, and off we went. 

Then when Jordan was about a year and a half old we noticed that his eyes would turn inward.  At age 2, we took him to our local optometrist.  We were told that, “Yes, his eyes are turning inward, but do not worry. Since he is so young his muscles will strengthen with age…” and to return the following year for a follow-up visit.  We did returned the next year.  Now, Jordan was 3 and his eyes were not any better! We went to the same optometrist and were told once again, “not to worry.” The optometrist said that he would need glasses, but that he was too young and probably would not keep them on.  Yet again he said, “Come back next year for a follow-up visit.” 

During this time, Jordan was still vomiting intermittently.  I recall vividly taking him to our local
urgent care and having an X-ray done of his stomach. We were told that his vomiting was caused by his bowels being impacted.  We questioned the reason and were told that there was nowhere for the food to go but up.  The explanation seemed logical at the time. We didn’t question it any further.

Then the comments began, “Is your son diagnosed with something?”  To which we would always reply, “No.”  Then at an urgent care visit, a physician posed the same question.  My response was now different, “No, should he be?” His response, “Nope, just wondering.”  His comment bothered me and we decided to speak with the nurse practitioner at Jordan’s pediatrician’s office.  She understood our concern and immediately sent us out for blood work.  To which everything came back normal, except for a food allergy to pork.

Jordan was now nearing age 5, and we were off again to the optometrist.  The only difference this year was our insurance had changed and we could no longer use the same doctor. This was a blessing in disguise.   I was at work and asked if my husband could take him to the appointment.  Without hesitation my husband took him. There, he received terrifying news.  He was told that Jordan had bilateral papilledema (swelling of both optic nerves) and that we needed an MRI done “stat” to determine if it was being caused by a tumor.  These words impacted my husband harder than me, because in my gut I knew that was not the case.  There had to be something else that was going on.  I began the footwork, which meant calling our pediatrician for referrals to a neurologist and a pediatric ophthalmologist. 

We waited an agonizing two weeks before we were able to be seen by the pediatric ophthalmologist.  During that time, we kept busy and pushed the word “tumor” as far back into our minds as possible.  We chose to not share any of the information with family, as we did not have any concrete answers.  The appointment day finally arrived.  The physician’s office was a good hour drive from our home and we were told that the appointment could take up to four hours.   When we walked into the office, there were children everywhere.  We waited our turn. Jordan had his vision tested and eyes dilated.  The ophthalmologist looked at us and said he was stumped.  He told us that if Jordan had a tumor, it would have only affected one optic nerve and not both.  This was the first bit of reassuring news that we had heard. Five and half hours into the appointment, Jordan had fallen asleep and the doctor walked into the room again.  He then looked at Jordan’s profile and did a double take.  He turned to my husband and me and said, “Wow, I haven’t seen a case in years, but I am pretty positive that your son has Crouzon syndrome.”  Elated, I turned to him and said, “I don’t know what that is, but it is 100% better than a tumor!”  He then looked at us and said he had a college medical book in his office that was pretty dusty, but it would explain the gist of things. Before we left, we posed the question, “If this was your child, what would you do?”  He told us to drive directly to the emergency room at Children’s Hospital Orange County to have his findings confirmed. 

Crouzon syndrome is rare genetic condition that results in premature fusion of sutures of the skull, which leaves the skull unable to grow with the child.  Other issues that arise from this condition include: dental problems due to crowded teeth, a severe under bite, poor vision, hearing loss, difficulty breathing due to a small airway, and possible fluid on the brain.

We followed the ophthalmologist’s advice and drove straight to the hospital when we left his office.  We all stayed as a family in the emergency room triage, until a room was available the following morning.  The next morning, Jordan’s MRI was performed. We waited for the confirmation of NO TUMOR.  Sure enough, the neurologist walked in and casually said, “No masses, but Jordan’s skull is partially fused.”  We were so relieved to hear “no masses” that the rest of his sentence didn’t resonate.  He then told us that he would need to place a bolt onto Jordan’s skull that had a wire attached to it, which is then inserted into his head.  This was going to check Jordan’s intracranial pressure (ICP), which was likely the cause of the intermittent vomiting. This information bombarded us all at once, at the time I could not process what he told us.  I knew that Jordan was finally at the right place and we would FINALLY receive some answers. 

That entire week was a complete fog.  I am not the type of person that Googles medical issues, so my main priority was Jordan and taking care of him.  My husband, on the other hand, started Googling immediately and kept trying to get me to look at his phone.  I wanted answers from the doctor, not the Internet.  Little did I know that the doctor would quickly turn into doctors… plural.

After our meeting with the Neurologist, we were paid a visit by the geneticist.  She was kind and asked if she could take a swab of Jordan’s saliva, just to confirm Crouzon syndrome, which she was 99% sure that Jordan had.  She looked at me and said that it was nothing that I did, or didn’t do, to cause this.  She then explained that it was caused by Jordan’s genetic makeup.  She then chuckled and looked at my husband and me and asked, “You aren’t related are you?” She said she had to ask for the questionnaire.  She explained to us that the ear, nose, and throat doctor and plastic surgeon may stop by to check on us and introduce themselves.

We did meet the plastic surgeon, who left a sour taste in our mouths.  There was no compassion in his voice as he explained skull surgery in vivid detail.  Mind you, we were now on hour 36 of NO SLEEP and still trying to wrap our heads around what Crouzon syndrome exactly was.  I looked at the Plastic Surgeon and asked if this surgery was going to be performed anytime soon, to which he responded, “No,” but that Jordan would require several skull surgeries over the next fifteen years.  He then looked at Jordan’s hands and feet and told us that we were lucky that none of Jordan’s digits were fused. After he left the room my husband and I looked at one another and neither of us knew what to say at the time, we were in shock and scared for our son.  At the time we didn’t know that Crouzon syndrome does not affect the digits, and apparently neither did the surgeon. This plastic surgeon is no longer Jordan’s physician.

Later, we consulted with a neurologist, Jordan was scheduled to have an intracranial pressure bolt implanted to measure the pressure in his skull. Doctors monitored the intracranial pressure bolt for less than 24 hours.  They were able to tell a few hours into the monitoring that his intracranial pressure was high and that they needed to implant ventriculoperitoneal (VP) shunt to control the cerebral spinal fluid around the ventricles in his brain.  The surgery for Jordan’s shunt was the following morning and he came out of it like a trooper.  He was discharged the following day.  We were beyond thrilled to finally be able to leave the hospital after a week-long stay and drove the two hours home as fast as legally possible.
Not even five minutes after walking into the door, Jordan grabbed my leg and hugged it as hard as possible.  He looked up at me and said, “Thanks Mom, I feel so much better.”  Tears streamed down my face as I wondered how long he had been suffering. Not once did he ever complain. I still marvel at the fact that Jordan was misdiagnosed for all those years.

Just like our lives changed dramatically when we finally received a correct diagnosis, our lives also changed when we found Children’s Craniofacial Association. This summer, in June 2016, we attended our first Annual Family Retreat & Educational Symposium. It put life into perspective and showed us what really mattered: our family. Having a child with a craniofacial difference includes a lifetime of hearing the whispers and feeling the stares. But at Retreat and with our CCA friends, outsiders melt away. We are stronger together. We serve as allies to one another.  Our children just want to feel included and safe and CCA makes it all possible.

We are so grateful to have found CCA. We are passionate about sharing the news with others! We have been fundraising since Retreat because we know we never want to miss this event again and we want to help more children find this place of joy and acceptance.

We know that Jordan will have many surgeries, which is certain.  Recovery time and frequency is not known, but we do know that we will have a huge support network surrounding us each and every time. I know I can call up my fellow CCA Moms and there is instantly an ear to listen to my fears and worries. I know that as Jordan grows up, he too, will rely on the support network of his CCA friends. They can text each other (well, maybe one day when he gets a phone!). The older kids provide excellent role models of how to walk this path with hope, joy, and a whole lot of fun, too. With the guidance and support of CCA we are now on track with Jordan’s Crouzon Syndrome diagnosis, and I am confident about our future.

It is with our greatest joy and sincerity that we ask you to open your hearts and donate to CCA during this holiday season filled with giving, so they might continue the work of connecting families and providing a safe, secure, and joyful place for families at the Annual Retreat.

Season’s Greetings,

The Watkins Family

Tuesday, December 20, 2016

From The Bench with Francis: Recent Developments in Cleft Lip and Palate Dental Research

By Francis Smith

I just found a newly released article in the Journal of Dental Research that links dental problems associated with cleft lip and palate to abnormalities in salivary glands and an imbalance of immune compounds in the mouth.

In his article, "Massively Increased Caries Susceptibility in an Irf6 Cleft Lip/Palate Model" in the Dec. 7, 2016, issue of the Journal of Dental Research, Dr. Timothy Cox (a researcher at Seattle Children's Research Institute affiliated with Seattle Children's Hospital and the University of Washington) found that dental problems (such as high risk for dental caries) commonly associated with cleft lip and palate are linked to abnormalities in the salivary glands. Dr. Cox found that mice with a mutation in the gene Irf6, involved in the formation of the lips and palate, not only had cleft lip and palate, but that the gene mutation also resulted in abnormal formation of salivary glands (as opposed to mice in a control group, with no Irf6 mutation).

Dr. Cox and his team knocked out this major gene in a group of mice during late embryonic development in the oral epithelium (the outermost layer of tissue in the mouth). Mice with this Irf6 knockout had poorly formed salivary glands, leading to reduction in salivary flow rate and buffering capability, while significantly increasing the acidity of the oral environment. Also, Irf6 knockout mice had reduced expression of a major immune cytokine in their mucosal and skin tissues, leading to increased oral bacterial colonization. Increased bacterial colonization, along with a highly acidic environment in the mouth, combine to cause dental caries. Mice with this knockout condition displayed increased susceptibility to dental caries as a result of the salivary gland abnormalities, leading to high acidity and increased bacterial content in their mouths that worked to erode their teeth. A high sugar diet made this problem even worse. From this work, Dr. Cox concluded that individuals with cleft lip and palate are more susceptible to dental caries due to genetically linked salivary gland malformations that compromise salivary function and immune response against oral bacteria, leading to the high acidity and bacterial content that are involved in dental decay. Due to their susceptibility to dental caries, the oral and dental health of people with cleft lip and palate should be closely monitored and preventative measures taken early on in life to reduce this risk.

Sunday, December 18, 2016

Check out Giving Assistant & Shop to Donate

There's a new, exciting way to raise funds for CCA with Giving Assistant. Shop online and save with coupon codes just for you! 

With Giving Assistant, your purchases from 1800+ popular online retailers have the power to support CCA's mission by helping us provide more programs, information, and support to families. In other words, we can do more. 

The best news about Giving Assistant is it’s free! When you earn cash back using their platform, you can also choose to donate a percentage of those earnings to Childrens Craniofacial Association. It’s like changing the world with every purchase. Make your first donation using Giving Assistant today, and get first dibs on deals like JCPenney Coupons, in addition to cash back donations at places like eBay and Kohl's!

Join Giving Assistant now to start donating 3-30% of every purchase to Childrens Craniofacial Association while you shop online at places like KmartTarget, and Sears.


Use Giving Assistant to save money and support Childrens Craniofacial Association

Wednesday, December 14, 2016

Is the Reflo Smart Cup Is Right For You?

By Kara Jackman 

We have a new product resource to share with you.

If you are looking for the right cup for your child, check out the Reflo Smart cup. Reflo has generously offered CCA a starter pack of cups to distribute in our care packages and we couldn't be more excited for our families to try them out! 

The Reflo Smart Cup is designed with an insert that goes inside the cup to slow the flow of water or juice. It dispenses exactly where the cup meets the lips. There is no need for suction with this training cup, so it is perfect for kids with craniofacial differences. Gravity does all the work! And it looks just like the cups the big kids use. 

You can check out this video they shared with us and find out more.

To sign up for a care package for your child for an upcoming surgery, please use this 

Tuesday, December 13, 2016

CCA Newsletter Arrives In Mailboxes Soon!

Check your mailbox for the brand new CCA Newsletter. It should be arriving soon. Read all the family stories, cheer on our successful fundraisers, and check out the calendar of events set for the new year. Prefer to read it online? Check it out here in full color by clicking the image below.

Monday, December 12, 2016

Ask The Doctor: Can Craniosynostosis be detected prenatally?

By Earl Gage, MD 
Kids Plastic Surgery, Mercy Children’s Hospital – St Louis, MO

Question: Can Craniosynostosis be detected prenatally? I am a 61 year old mom who gave birth to a daughter in 1991 with craniosynostosis and would like to let her know this answer when the time comes for her to get married and start her own family.

Answer:  Thanks for your question. In short, I would say that detection of craniosynostosis by prenatal ultrasound is difficult. This is partially due to the difficulty in getting a “clear look” at the sutures  (or skull expansion joints) when the baby is active and moving in the womb. In addition, prior to birth, the skull bones are not fully developed and have not calcified completely. This can make it more difficult to see the sutures and determine if the bone is fused. In fact, I can think of instances where a newborn child clinically appeared to have craniosynostosis but an early skull xray or ultrasound, obtained by a pediatrician, seemed to show the suture was “open.” In essence, the child had craniosynostosis and a non-functioning suture, but the suture hadn’t calcified sufficiently to make fusion detectable by imaging.  For these reasons, I prefer to rely on a good clinical exam of a newborn infant rather than on ultrasounds or xrays done before birth or even in the first days of life.
While definitive diagnosis of craniosynostosis is difficult prior to birth, there are instances when craniosynostosis is suspected prenatally based on abnormal head shape as detected by ultrasound. For instance, when a child has sagittal synostosis, the skull becomes elongated front-to-back and sometimes tapers posteriorly. This characteristic shape may be seen on ultrasound. Similarly, with some types of syndromic craniosynostosis (eg Pfeiffer syndrome), a markedly abnormal “clover leaf skull” deformity may be present, and this can be detected by ultrasound, too. A diagnosis of craniosynostosis can even be suspected based on the occurrence of other associated abnormalities picked-up on ultrasound, such as fused fingers and toes as seen in Apert syndrome, a condition frequently associated with bicoronal craniosynostosis. However, since abnormal skull shapes due to craniosynostosis are usually mild prenatally (and even at birth) and since head shapes tend to get progressively worse over time, prenatal head shape findings can be subtle and are not always obvious. For this reason, it is most likely that ultrasound detection of abnormal head shape suggestive of craniosynostosis may not be possible until later in pregnancy.
When a diagnosis of craniosynostosis is suspected based on head shape or based on other abnormal findings with the unborn baby, I would encourage the family to meet with a craniofacial surgeon and discuss the possible diagnosis and what may be involved in future care. Ask a lot of questions and do some research before things get really busy with the baby’s arrival. Once the baby arrives, diagnosis of craniosynostosis may just require a physical exam, but additional imaging with a CT scan or MRI may be suggested by your team.

Tuesday, November 29, 2016

It's Giving Tuesday!

Today provides you with an opportunity to start the holiday season off on the right foot by donating to CCA this Giving Tuesday. You may have started your Christmas shopping on Black Friday and continued yesterday, on #CyberMonday, but today you can give back!

Today you can give the gift that keeps on giving to CCA families and kids that need your support through programming and trips to quality medical centers and hospitals for treatment of their craniofacial differences. You can also send a family to our Annual Family Retreat & Educational Symposium, where many kids see others that look just like them, for the very first time. It is a very powerful weekend. With your donation, you can make the retreat weekend in Reston, VA in 2017 possible for a family.

Please share with us today the gifts of good health, acceptance, and love. Three things that never go out of style!

Read more about the history of #GivingTuesday here:
And don't forget to let others know you donated to CCA on social media by using the hashtag #GivingTuesday. 

Thank you! 

Tuesday, November 22, 2016

Get Ready For Giving Tuesday

Giving Tuesday, what's that?

It is a day to give thanks and donate to your favorite non-profits as we kick off the holiday season. There's Black Friday, then Cyber Monday... then the universal day to give back, Giving Tuesday. Please participate by donating to CCA via our special donation page located here:

For those of you who are able, please consider a gift of $500 or more, because from now until the end of the year, CCA has received a special Challenge Match Grant, which will match all donations dollar-for-dollar, up to $25,000.

To be honest, individual contributions have been down this year, so this Challenge Match Grant is especially important to help us close our funding gap. We are so grateful for this opportunity and we hope you will help us continue funding our critical work of providing travel assistance for medical travel, the Annual Family Retreat & Educational Symposium, and our website which directs families to qualified medical centers.

Monday, November 21, 2016

Deaf-Friendly Games for Kids Parties

Editor's Note: Daisy Welch of the Wooden Toy Shop located in Lancashire, United Kingdom has some great suggestions for kids party games. The games are perfect for all children, especially those with hearing trouble. What better time for games than now as we gather with family and friends to celebrate Thanksgiving and the Winter Holidays. Enjoy!

By Our Friends at the Wooden Toy Shop, Lancashire, United Kingdom

While its natural to worry about all the children feeling included in a kids party, there really is no need to worry if you throwing a party with a deaf child in attendance. There are loads of great games that all children, and quite a few adults, will enjoy. Here are some of our favorite party games and tips for throwing an inclusive children's party. These games are ones you will probably already know, but with fun twists to make them more inclusive and even more fun!

Deaf-friendly games for a childrens party

Thursday, November 17, 2016

Thankful Thursday: Video

By Kara Jackman

There are so many gifts that come along with being different. We experience different points of view, are able to put things in perspective, and perhaps, most importantly, laugh. So today on this Thankful Thursday, I hope these short videos find you grateful and living a life filled with laughter. It is, after all, the best medicine.

A big thank you to the Facing Advocacy Tumblr page for sharing these videos with the world.

Wednesday, November 16, 2016

Francis Smith: Patient, Researcher, and Inspiration

By Kara Jackman

In September, CCA Kids Blog covered one of our members, Emily Paulson, that went from patient to nurse. Francis Smith turned his adversity into positivity, too.  Motivated by his facial difference, Treacher Collins, Smith works as a dental researcher at the University of Colorado. He provides other researchers and doctors with whom he works with the much needed patient perspective. Smith is very inspirational and has a recurring series on our blog called "From the Bench," where he shares he experience and hope with the CCA community.

In October, the University of Colorado Anschutz Medical Campus wrote a piece for their online newspaper CU Anschutz Today. Guest contributor, Debra Melani, interviewed Smith about his life, surgeries, strength, and the work that must continue to help benefit future people with genetic disorders.

Smith researches, "bioinformatics and genome analysis of embryonic tissue under the supervision of CU School of Dental Medicine Associate Professor Trevor Williams, PhD." Smith is also an advocate and spokesman for those with craniofacial differences. He has written blogs and spoke in many places around the globe.

Learn more Smith, his work, devoted adopted mother, and perspective on life in the article published on the CU Today website. In case you missed it in a previous blog post, view the video below, too, where Smith discusses Treacher Collins and his work with scientist, Michael Rape, of the University of California, Berkeley.

Thursday, November 10, 2016

Thankful Thursday: Gratitude in the Little Things

Sometimes we all need to look back in order to look forward. I did just that in selecting this quotation originally posted in Fall 2013. 

This month is one that ends with a celebration of Thanksgiving. If you are not feeling grateful right now, know that as the quotation says, it takes "courage" to face difficult events and situations. 

And so, through practice on small things, like a hug from your child, a kiss from the dog, or a hot cup of coffee in the morning, let us try to be grateful for the small elements of our lives that make them worth living. Enough time and focus on the innumerable "little things" will add up, so we may know joy, or at least contentment. 

With the above guidelines in mind, what are you most grateful for this year, this month, this day, this moment? 

Wednesday, November 9, 2016

Boston Researcher Uses Technology to Help Jaw Degeneration

Boston University researcher Pushkar Mehra utilizes 3-D printing and principles of engineering to save the lives of patients with Idiopathic condylar resorption, a condition where the bones in the jaw can degrade and block the ability to breathe.

In the video, you will see a grateful patient that received surgical intervention with the help of Mehra's research. To learn more about the work that Boston University Dental School is doing, follow this link. 

Monday, November 7, 2016

CCA Blog Interviews Fearless Creators, Bradley and Dan

Fearless Creators Dan Gremminger and Bradley Harding create a new set of Holiday Cards for CCA!

Fearless is an inspiring collection of poems and illustrations created for children with craniofacial challenges. Originally published in 2001 by Children’s Craniofacial Association, the small regional release was immediately embraced by children and families affected by facial difference. This 10th anniversary edition has been redesigned for the eBook platform! 

Now the dynamic duo that created this original book for CCA Kids have done it again and created a set of beautiful holiday cards with stories in poetry form that will inspire you and warm your heart, all while spreading the message of acceptance to your friends, families, and colleagues. 

Please preorder a set (or several) today and they will arrive to you in time for holiday card mailing. Keep reading for an exclusive interview with the creators, Dan Gremminger and Bradley Harding.  

CCA: Where are you from?

Bradley: I grew up in Oklahoma City, but I claim New York City (where I lived once about six months).
Dan: A charming small village on the Texas Plains called Weatherford.

CCA: When did you first start drawing and illustrating / writing / creating?

Bradley: I first started creating when I was very little. Some of my earliest memories are making up elaborate stories and acting them out (by myself) in my backyard. I began writing little plays and short stories when I was about 7-years-old.
Dan: I have always drawn, doodled, colored and painted. It was always my special “calling” in school and helped to set me apart from the other kids.
CCA: How did you first learn about CCA?

Bradley: Our wonderful neighbor Judy worked for CCA and knew that my partner and I were creatives. She asked us one day if we knew anyone who had written a children’s book. I told her that we had created one (called What Do You See?) that was almost published, but shelved at the last minute.

CCA: What motivated you to create Fearless?

Bradley: Once we were introduced to the CCA staff and learned about its mission, we felt an instant connection. We were asked if we had any ideas about a children’s book celebrating diversity and facial difference. Right away we had an idea that we thought would be engaging to both kids and their families.

CCA: When did your art turn into more than just a hobby?

Bradley: I think most artists are simply driven to create. Writing was something that I always did. It has always been a part of me. I never thought of it as a hobby, though it was so close to me I also didn’t think of it as a skill for the longest time.
Dan: I’ve enjoyed a life-long connection to creativity. I feel so lucky to have art in my corner, because I always knew what I would pursue career-wise.

CCA: What’s your process like? How long does it take to go from idea to finished product?

Bradley: When I am writing a piece of fiction, sometimes it takes a very long time. I have to have the story (whether it’s a book or film project) already written in my head before I put anything down on paper. And I do still write all my first drafts in long hand in a notebook.
Dan: Sometimes the process can be lightning fast. An idea can pop into my head fully formed and it’s just up to me to bring it to fruition. Other times, the process can be more drawn out. I will sketch and play with various tangents around the subject and bring out solutions in a more organic way.

CCA: Who are some of your favorite illustrators and artists?

Bradley: I love so many children’s authors. Shel Silverstein (whose books of children’s poetry inspired Fearless), Judith Viorst, Ellen Raskin, Roald Dahl, Kate DiCamillo and Maurice Sendak.
Dan: Classic artists like Picasso and Van Gogh inspire me on a continual basis. Contemporary artists like Chuck Close, Gary Bateman and Chris Ware speak to me and lift me up. David Wiesner is my favorite children’s book illustrator.

CCA: What’s your favorite work you’re done? 
Bradley: I think my favorite work in this genre has to be Fearless. The entire process was very touching, very inspiring. Hearing many of the stories about the CCA kids and their journeys were very inspirational.
Dan: My favorite work is usually the most recent piece I’ve completed and right now, that is my painting that just won a Blue Ribbon at this year’s Texas State Fair, my Big Tex painting titled “Howdy Folks.”

CCA: What inspires you?

Bradley: Words and pictures that move me.
Dan: Beauty strikes me in many places: a lovely cloud, the colors of a sunset, the light and shadow on a person’s face or the depth in one’s eyes.

CCA: What other hobbies do you have?

Bradley: I am also an entertainment writer and filmmaker.
Dan: In addition to making short films with Bradley, I love to cook.

CCA: What does a day in your life look like?

Bradley: I am usually at the computer, writing. I work as a copywriter, so I write every day.
Dan: Working with fellow advertising folks to create compelling online and print advertising. Most of my time is spent working on the computer or designing on art pads.

CCA: What does kindness mean to you?

Bradley: It’s making a genuine connection with another person. It’s a selfless, empathetic acknowledgement of acceptance – and solidarity.
Dan: It’s treating others with the love that you would hope they show you in return. It is patience and empathy.

CCA: What’s your motto?

Dan: Because it informs my decision-making process and helps me to appreciate being in the moment, I often remember that “Life is Short.”

CCA: Why did you agree to help out CCA? (We’re so grateful!)

Bradley: Because we are all different and we should celebrate that every day.
Dan: Ditto.

CCA: Name five things on your list of things to do before you die.

Bradley: Make a movie, write another children’s book, make another movie, learn French, meet Claudine Longet
Dan: Make a feature length film with Bradley, create another children’s book with Bradley, visit the active volcano in Hawaii, spend a day in the Louvre, and (fantasy alert!) win an Academy Award.

CCA: Thank you both so much for donating your time, talent, and passion to CCA over the years!

Friday, November 4, 2016

Funny, Inspiring, 'Ride High Pineapple' Is A Great Read

By Kara Jackman 

Interested in an inspirational read for kids and adults? Were you born with a facial difference and faced a bully at school? Then Jenny Woolsey’s Ride High Pineapple just may be the perfect book for you. 

Author, Jenny Woolsey
Woolsey tells the story of Isabella Burgess, a 13 year-old girl that has a secret and bravely decides to share it through a speech she must give about herself in one of her classes. She shares with her fellow students that she has been bullied. She hopes in sharing her personal struggles that the bullying will stop. 

The story is not all doom and gloom. There is lots of joy, excitement, redemption, and the typical pre-teen ups and down, that play out throughout the book. Issy loves to skateboard, even though her Mom worries a lot about her doing so. Her father is supportive of her visits to the skate park. There, she meets friends and falls in love with a boy  who helps her with boarding techniques. 

Issy battles anxiety and depression head on, in a very open and vulnerable way. She has thousands of thoughts about her best friend, Tilly, her face, the bully she faces, and more which she chronicles in her diary. Issy mainly questions Tilly's loyalty when a new, popular girl moves into town. Woolsey does a tremendous job of sharing what it is like to experience Generalized Anxiety Disorder through Issy's diary entries. She is a trustworthy narrator because of her vulnerability and honesty about her thoughts and emotions. 

One day at school, Issy learns that an X-treme sporting event will be held at school. Her teen crush, and friend from the skate park, take part in the three-day clinic held by the professional skaters. One of them is a woman, who takes Issy under her wing, helping to improve her skating skills and confidence  in herself.  She tells Issy that she must think of herself as a pineapple, sweet on the inside, and tough on the outside. If she does that, Issy will be able to accomplish anything she puts her mind to. 

Issy faces additional challenges when she skates in an exhibition competition during an assembly at school, only to fall and break her arm. Will she make it beyond this challenge, too? Will her mother ever let her skate again? Will this mean the end of her friendships? 

You will have to read Ride High Pineapple to find out. 

Author with her children.

About the Author, Jenny Woolsey

Author, Jenny Woolsey is an advocate for facial differences, inclusion, and mental health awareness. She and her children were born with Crouzon’s Syndrome. She says, “Growing up with a a face that was considered a deformity was hard. I was teased daily."

Woolsey realized as a former patient, a current teacher, and advocate for her own children, that a book about someone with a facial difference had not been written. She hopes that the book “raises awareness” and “gives strategies for self-empowerment and self-belief” to those that are bullied about something that they can do very little to change: their appearance.

Children Craniofacial Association supports Woolsey’s mission and message. Erica Mossholder, CCA Executive Director, wrote the book’s foreword. Furthermore, CCA’s logo appears on Ride High Pineapple sealing the story’s approval that is sure to help all people affected by facial difference all over the world.  

Woolsey lives in Australia. You can learn more about her and life as a teacher, blogger, and mother on her website at 

Tuesday, November 1, 2016

Giving Tuesday is one month away!

Giving Tuesday, what's that?

It is a day to give thanks and donate to your favorite non-profits as we kick off the holiday season. There's Black Friday, then Cyber Monday... then the universal day to give back, Giving Tuesday. Please participate by donating to CCA via our special donation page located here:

For those of you who are able, please consider a gift of $500 or more, because from now until the end of the year, CCA has received a special Challenge Match Grant, which will match all donations dollar-for-dollar, up to $25,000.

To be honest, individual contributions have been down this year, so this Challenge Match Grant is especially important to help us close our funding gap. We are so grateful for this opportunity and we hope you will help us continue funding our critical work of providing travel assistance for medical travel, the Annual Family Retreat & Educational Symposium, and our website which directs families to qualified medical centers.

Monday, October 31, 2016

Ask The Doctor: Tonsillectomy For Sleep Apnea?

By Earl Gage, MD 
Kids Plastic Surgery, Mercy Children’s Hospital – St Louis, MO

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!

Question: I have seen a few children with sleep apnea that improved after tonsil and adenoid removal. I know of one child that the surgery made their sleep apnea worse. Do you recommend this procedure? Do you do a sleep study first? It seems to be a “trend” with doctors right now.

Answer:  When a child has a craniofacial condition, particularly one that results in undergrowth of the midface, sleep apnea is common. If obstructive sleep apnea is severe, this can result in significant sleep disturbances and low oxygen levels, which can have a negative impact on development. In some instances, severe apnea can even be life threatening. 

If a child has mild to moderate sleep apnea and large tonsils, I believe it makes sense to consider tonsillectomy. Many times, this results in substantial improvement in nighttime breathing and quality of sleep. In more severe cases of obstructive sleep apnea, additional treatment beyond tonsillectomy may be required, depending on the age of the child. These might include midface distraction, LeFort advacement or tracheostomy. The goal with any intervention is to improve breathing, improve sleep quality and help your child develop normally.

Regarding need for a sleep study, I would say it largely depends on the reason for the tonsillectomy. There are multiple reasons that an ENT surgeon may recommend tonsillectomy, including frequent infections, tonsillar abscesses, diseases of the tonsillar tissue or obstructive apnea, to name some of the most common. Where tonsillectomy is done for infection or disease related reasons, a sleep study is probably not necessary. However, when tonsillectomy is being considered to address sleep apnea, as is more commonly the case in children with craniofacial disorders, then it probably is a good idea to obtain a sleep study. The sleep study can help you clarify how bad the sleep apnea is and whether it is obstructive (due to a mechanical blockage) or central (where the brain “forgets” to breathe). If severe obstructive sleep apnea is seen in a child with both big tonsils and midface undergrowth, then the study may help predict whether tonsillectomy alone is likely to help. For instance, if apnea is severe, the tonsils large and the midface severely retruded, it may be that tonsillectomy will help some but not enough. Recognizing this before tonsillectomy can lead to a larger team discussion about what other interventions may be required and how these should be sequenced and timed. Finally, when compared to a post-operative sleep study, the pre-operative sleep study serves as a useful baseline to determine if surgery was successful and helps your team decide if something else needs to be done.

I hope this helps. As always, please don’t hesitate to raise your concerns and your questions with your team.  

Tuesday, October 25, 2016

Dawn Shaw Shows Us How To "Friend the Mirror" in Her Series of Webinars

By Kara Jackman

Dawn Shaw, motivational speaker, author, and writer gives children and adults with facial differences a way to love and accept themselves through a series of webinars. Shaw was born with a fast-growing tumor called, a a teratoma. The tumor affected her ability to breathe at birth. A  tracheostomy was performed so Shaw could breathe and the tumor removed. This left her with some paralysis, a jaw that needed realignment, hearing loss, and paralysis. She owns and operates an Icelandic horse farm where she lives with her husband, Ian, in Washington. 

She writes blog articles and has written three books, Facing Up To It, which chronicles her personal story, and Facial Shift: Adjusting to An Altered Appearance, and Friending the Mirror: Changing How You See Your Reflection. 

Her book, Friending the Mirror, gave way to a series of webinars. All of them were recorded and saved to her website. The first episode that appears below, introduces viewers to the series and Shaw's goals for them, which are "to help people find beauty through happiness by directly addressing and providing practical solutions for issues and insecurities related to appearance, disabilities and other physical challenges."

There are over 50 webinars available. Her skills as a video and communications professional shine through in these well-scripted recordings where Dawn, and others, share on a variety of different topics around acceptance, diversity, and adversity that come with looking different.  

Another of Shaw's webinars we think you should view is Episode 26 called "Beauty = More than a 'Like.'" This episode features Crystal Hodges, a woman born with a portwine birthmark. Unfortunately, an image of her went viral as an Internet meme. Hodges took this negative experience and turned it into a positive by working "to redefine society’s understanding of true beauty via blogging and public speaking, emphasizing that photos are made up of far more than pixels and that we don’t need strangers on the internet to validate who we are," says Shaw. Hodges discusses the value of mentorship and how to find and capture beauty. You can watch it out below. 

We will be featuring more of Shaw's words and videos in future CCA blog posts. Shaw is such an inspirational and elegant speaker. We know you will learn so much from her perspective of the herself and the world.

Friday, October 21, 2016

Make An Impact...Help Researchers Test A Survey for Diagnosing Rare Diseases

Take the Survey Today!
By Kara Jackman

Have a rare disease or want to help family and friends that do? Take part in the testing of a survey tool created by Engage Health and LapidusData for Global Genes. With your expertise in the area of rare diseases, an improved form of the survey will be distributed widely to help identify whether a person has a rare disease. And based upon their answers to the questions that are part of the tool, they will be directed toward an appropriate set of resources to help in their treatment.

How Does It Work?

The researchers from Engage Health and LapidusData say, “The tool uses a set of questions that ask about common experiences of rare disease patients. If their answers indicate that they have a rare disease, the tool would then provide them with helpful resources that they may not have been aware of.” People unaffected by rare diseases can take the survey as well.

Where Can I Find the Survey?

The survey is located at this link.. If you have any questions regarding the survey, please send an email to Maureen McArthur.
What Is A Rare Disease?
A rare disease is one that only affects 200,000 or fewer people. In the U.S. ten percent of the population has a rare disease. Patients have a difficult time communicating, receiving quality medical treatment, and getting a diagnosis from medical professionals.

Who is Global Genes?

Global Genes is a California-based, national nonprofit that strives to change the current state of those suffering from a rare disease through advocacy. Through this survey, you can aid them in their fight to destroy these barriers to treatment. Global Genes mission statement asserts, “to eliminate the Challenges of Rare Disease by building awareness, educating the global community, and providing critical connections and resources that equip advocates to become activists for their disease.“ Learn more about their work at .