Tuesday, October 31, 2017

#WonderWednesday: Michigan Students Accept The #ChooseKind Challenge

Our friends in Kelly Prisby's fifth grade class at Immanuel Lutheran School in Macomb, MI reported that they took and completed the Choose Kind Challenge!  Look at the smiles! I can feel the kindness, can you? 

Below is a letter from Ms. Prisby about her class's participation in the program. 

Hello CCA!

We are honored and privileged to have completed the CCA "Choose Kind Challenge".  We have read the Wonder novel, individually taken the "Choose Kind" pledge in written and oral form, made Wonder self portraits complete with our own acts of kindness, as well as completed "Compliment Sheets" about every student in our 5th grade classroom.

We have connected with a real life Auggie (Jakob) from the CCA organization and are awaiting our first return pen pal letter from him.

We are going to see the Wonder movie on Opening Day, November 17th.

This novel and the CCA "Choose Kind Challenge" have shaped our classroom community and we feel abundantly blessed!

Thank you for all you do and raising awareness in our community!

'Wonder' Curriculum.Choose Kind Pledge, and More!


Let Children's Craniofacial Association help you bring R.J. Palacio's "Wonder" into your school's  curriculum this year by reading the book, using CCA's cool program packs, and inquiring about having a "Real Life Auggie" visit your school. Learn more about all that we have to offer at our "Wonder 4 Schools" webpage. 

Would your child like to be one of our CCA WonderKids? We are contacted by more and more Elementary and Middle schools who want to be connected with a "Real-Life Auggie," who is the main character from the book, "Wonder." This is one of the elements of CCA's Choose Kind program. 

Contact Annie Reeves for more curriculum options created specially for CCA or to volunteer in the Real-Life Auggie program. 

Parents, let your schools know all that we have to offer to support them in teaching the message of kindness from this significant book to our community. We have everything from bookmarks to the ChooseKind pledge that your students can take at the beginning of the school year. 

Cards and words of encouragement written by a class after they read "Wonder."

The student response in the schools that have run our programs and curriculum packs has been impressive. Other project ideas that CCA offers students are a penpal program, Skype sessions, and visits by the aforementioned "Real Life Auggies", our CCA Kindness ambassadors. Your students could be writing letters, sending cards to the Wonder Kid we assign you. Many receive standing ovations at the assemblies  they are part of when they visit the schools. 

If your child would like to volunteer to visit a school or if you are interested in CCA's curriculum packs, contact Annie Reeves, areeves@ccakids.com. Your child must be between the ages of 9-18 to participate. 

All of these cool ideas will help you teach this important book to your children. Hopefully, it will change the way they see and treat others this school year and in the ones to come!

Monday, October 30, 2017

From the Bench With Francis: My International Outreach Experience

From the Bench with Francis
A regular column on craniofacial news and technology by Dr. Francis Smith

My International Outreach Experience: Australia, UK, and Ireland, September 2017

My career has been evolving into a combination of craniofacial scientific research and public engagement and advocacy for awareness of craniofacial anomalies and the advances in medicine and research for them. My life experience with Treacher Collins syndrome has placed me in the unique position of an ambassador between the personal life experience side and research and medicine and the public. Back in my childhood and youth, I was occasionally featured in my local and state newspapers, on TV, and on radio to tell my story, and once authored a chapter in Jill Krementz’ 1992 book, How It Feels to Live with a Physical Disability. Over the years, my opportunities for public outreach have expanded. As I have ventured far and wide on this planet, I have gained a larger, global audience, having studied in the United Kingdom and gone on to work in the USA and Canada. My first overseas opportunity for public engagement through speaking was in 2010, when I presented an invited keynote lecture to the dental school at the University of Otago in Dunedin, New Zealand. 

During my life in Canada from 2012-2015, I was interviewed by the Canadian Broadcasting Corporation (CBC) TV and radio locally and nationally. When I moved back to the US in 2015, I did my first podcast (with BoneLab Radio at the University of California San Francisco, my PhD alma mater) and began contributing to the CCAKids Blog with my own regular feature, “From the Bench with Francis”. I have also spoken in churches and other public venues as well as in schools in the US and Canada in recent years. My memoir, Wonderfully Made: The Dr. Francis Joel Smith Story, authored by Michele DuBroy and myself, is in publication and should be released sometime next year.

I have recently ramped up my global drive for public engagement. Last year (January 2016), I made my first return visit to London since I finished my education there in 2007, and revisited my alma mater King’s College London, spoke to my old craniofacial department there, interviewed my old mentors at King’s, spoke at another university’s event, and even visited a colleague in Dundee, Scotland, to interview him too for my ongoing project of collecting video in-person interviews with craniofacial researchers.

This year has been especially busy. Last month (September 2017), I visited three countries—Australia, the UK, and Ireland. In March, I had met some new Australian colleagues at the American Cleft Palate-Craniofacial Association (ACPA) meeting in Colorado Springs. Upon meeting me, they wanted me to come visit them in Australia the next chance I got. I finally got the opportunity to do so last month, and made my first ever trip to Australia (which had been a childhood bucket list item). 

So, from August 28 through September 6, I journeyed down under. I ended up in Perth, Western Australia. On Friday, September 1, I gave a talk to the craniofacial doctors and scientists at Princess Margaret Hospital for Children about my life experience with Treacher Collins syndrome, my educational journey, and my research experience. After my talk, my colleagues I had met in Colorado earlier this year took me through the craniofacial clinic there and on one of the wards to meet patients, doctors, families, and others. The next day (Saturday the 2nd), I spoke to a group of families—FaceUp, a local craniofacial family support group, about my life experience. Early in the following week, I gave yet another talk—to a group of geneticists at King Edward Hospital. Sometime during my week in Perth, I returned to Princess Margaret Hospital and met with a new research colleague who does 3-D camera imaging of children with craniofacial anomalies and morphometric analysis of their facial shape, to help surgeons plan surgeries and predict the ideal facial shape postoperatively. 

He expressed a greater need in Western Australia for more expertise. I have experience and expertise in craniofacial imaging and morphometrics (from working in Canada previously), and have put him in touch with my US and Canadian colleagues in craniofacial morphometrics. I have also expressed an interest in working there in Australia with my expertise in craniofacial morphometrics, if and when an opportunity (and funding) becomes available; they are keeping an eye open for one. I have also been invited to give a talk next May in Sydney as a guest speaker at their national cleft palate meeting.

After a week’s rest at home from my trip to Australia, I got right back on a plane on September 16—to London, England, to revisit my alma mater King’s College London and give talks there and at another university in the UK and meet colleagues in England and Ireland, for a fortnight (two weeks, in British English). I spent a week and a half in London, revisiting old neighborhoods and old haunts from my life there (2004-2007); I was right back at home there. I gave a talk to students and faculty in the craniofacial department at King’s about my life experience, education, and research, and met afterwards over drinks with students. I also met old friends in London during that week. Later that week, I visited the UK charity Changing Faces, and met with their executive staff, who expressed an interest in working with the CCA in the US on collaborative efforts at raising craniofacial awareness and promoting the upcoming film Wonder in the UK. I was instrumental in getting Changing Faces and CCA working together. I went up to Norwich and met another research colleague and gave a talk at his university, the University of East Anglia. There, I met with a family—all of whom have Treacher Collins syndrome to varying degrees. Later, I went to Manchester and interviewed with Dr. Michael Dixon, who found the gene for TCS in the 1990s, for my interview project. After my week and a half in London, I flew to Dublin, Ireland (my ancestral homeland) to visit a craniofacial surgeon colleague who works at Temple Street Children’s Hospital and Mater Hospital in Dublin. In our discussion, he expressed a great need for craniofacial scientific research there in Ireland, and I expressed an interest in helping him if I could think up a research proposal. My colleagues in the UK and Ireland are aware of my search for a new research position there, and I hope I can eventually find one there, if not in Australia or (less likely) the US. Since London was my first home away from home, and my career in craniofacial research was birthed there, I yearn to return to London one day and work there…once a Londoner, always a Londoner.

My current postdoctoral fellowship here in Denver ends April 2018, so wish me the best in finding my next position—in Australia, the UK, Ireland, etc. Meanwhile, my public engagement work will continue to take me to parts unknown on this planet. In fact, my next trip is to Bauru, Brazil, for three weeks in November, to visit the Hospital for Rehabilitation of Craniofacial Anomalies, a whole hospital dedicated just to craniofacial research and treatment. That might open future opportunities for my career, too!

Friday, October 27, 2017

Reuters: Children with Craniofacial Conditions More Likely To Experience Anxiety, Depression

While this is not breaking news for most, it is good to know that researchers at the University of California Los Angeles committed to study mental health in children born with craniofacial conditions. The study focuses on incidents of anxiety and depression among children with facial differences. 

World Mental Health Day took place on October 10th. Today, more attention is paid to the mental health of all individuals. Thankfully more and more people are talking about this important topic. Read more about the research done in UCLA with regard to kids affected by facial differences on this website

Wednesday, October 25, 2017

#ThankfulThursday: VIDEO Star Wars, Halloween, and Gratitude

A friend of mine sent me this excellent video with a Star Wars theme. Upon watching it, I immediately realized this video embodies all the things we love about CCA -- courage, kindness, and community. So much gratitude flooded through my body. I knew I needed to share it. 

And well, the timing of this video is perfect too since Halloween is right around the corner. Enjoy! 

Hope you all have a happy and safe Halloween. 

#WonderWednesday; NY Times Suggested Lesson Plans for Students Reading 'Wonder'

The New York Times is a reputable news source and now an educational advocate for people born with facial differences and disabilities. The Times, through their "Text to Text" series, pairs NY Times columns and essays with the a book. They did this for "Wonder." 

You can use their Activity Sheets that will help analyze the books with the supplementary reading material provided by the Times. I think this is a great way to get students critically thinking about what they read, and also to gain a better understanding of what each character in the book experiences through the Auggie Pullman attending school for the first time after years of home schooling.  create some 'Wonder'ful lesson plans for teachers and reading groups to follow for readers to get the most out of R.J. Palacio's book. 

I hope you find these resources helpful. Write to us and let us know if you have used them in your classroom or reading groups. CCA also has specialized curriculum to help you teach "Wonder" in your classroom. Contact Annie Reeves to inquire about these resources. 

Friday, October 20, 2017

Ask The Adaptive Athlete: Follow-up on Bike Brakes

Many thanks to Eleanor and Catherine for their question about how to adapt a bike's brakes. We enjoyed answering your question in our first "Ask The Adaptive Athlete" blog post published in August 2017. Even better, you were kind enough to update us on your daughter's progress after implementing the advice we provided about installing coaster brakes on the bike. Here it is:

Hi CCA Kids blog Thanks for your help regarding the bike information. Catherine just collected her new bike with coaster brakes from a wonderful shop in Dublin Ireland called Angel Bikes. She will have many independent years cycling on this very pretty bike! Thanks again Eleanor & Catherine

Thanks for the picture, too. It is worth a thousand joyful words.

Wednesday, October 18, 2017

#WonderWednesday: Alumna Speaks at Marysville, Washington Elementary School

Beauchamp takes a selfie after her visit with Hillcrest Elementary School

The students in Jessica Simonson's Hillcrest Elementary School classroom in Lake Stevens, Washington enjoyed the opportunity to learn first hand about kindness thanks to a visit from Abby Beauchamp, a 24 year old woman born with Lymphatic Formation. In this article published by the Herald Net, we read how elementary school teacher, Jessica Simonson read the book "Wonder" with her students. She asked Beauchamp if she would share her story, which is very similar to that of the book's protagonist, Auggie Pullman. Beauchamp spoke about what it felt like to live with a facial difference and the impact kindness has on everyone, but especially those who look different. 

If your school or community group is currently reading "Wonder" and you would like to have a child or adult speak to your group, contact Annie Reeves to make the arrangements.  Skype calls are also available. 

Thursday, October 12, 2017

Teacher Profile: Teaching "Wonder," Teaching Empathy

Abby Beauchamp embraced by a group of students at 

By Jessica Simonson 

I have read Wonder by R.J. Palacio to my fifth graders as our very first read aloud for the last three years. It is an important book. As a children’s literature superfan, I’ve read thousands of picture books and novels, and Wonder stands out in its ability to connect with its young readers and communicate empathy. Studies show that empathy is an emotion that needs to be taught. It is a human trait found in our prefrontal cortex and is developed through experiences and conversations about “putting yourself in someone else’s shoes.”  I am comforted knowing that as I read Wonder to my students, I am helping them develop this very human emotion.

I also love that Wonder has provided a shared language to use with my students. I can encourage them to “be a Summer” which they know means: be the kid that finds someone who needs a friend. Reach out. Kindness can take a little bit of bravery because you are the one putting yourself out there, but it’s worth it!

This year, our read aloud was brought to the next level. We met a Wonder Kid! Abby Beauchamp, a 24 year-old who grew up with craniofacial differences came and met with our third through fifth graders at an assembly. I have never seen a group of 400 children so riveted. When Abby shared her story of how she was treated throughout her school career, you could see the shock on the faces of the children. When she told them that she ate lunch by herself in the bathroom stall for the better part of middle school, they were outraged. They were hurt for her. You could see empathy being developed in 400 little hearts and brains right before your very eyes. I was moved to tears. And to put things in perspective for you, I didn’t even cry during the movie Titanic! (And my thirteen year-old-self LOVED Leonardo DiCaprio with all my heart!)

Abby left the assembly feeling like a rock star which to her, was a very new experience! My kids left feeling like they had made a new BFF.  We all left knowing that next time we meet someone that looks different, we shouldn’t point or stare or whisper. We shouldn’t assume they have special needs. We just need to smile, shake their hand, and treat them like we would anyone else because really, they are just like us! All we need to do is change the way we see.

As one of my kids wrote in his thank you note to Abby, “you helped change our hearts and our minds, and I’ll make sure that no kid will ever feel like they need to eat lunch alone in a bathroom stall ever again.”  #ChooseKind

#ThankfulThursday: Words and Photos From Pittsbugh's First Friend-raiser Event

It is always great to get positive mail from our CCA friends and families that do new and great things during Craniofacial Acceptance Month. Pittsburgh, Pennsylvania got introduced to all the Wonder that is CAM last month, thanks to Elizabeth Kearns and Lisa Bowers. Here is what Elizabeth wrote to us about their experience hosting the first picnic in September: 

September 17th was a beautiful day for Pittsburgh's First Craniofacial Acceptance Picnic! Nine families gathered from all over Western PA to talk treatment, lament about doctors...surgeries, but mostly to watch the kids being kids and to eat some delicious food!  The kids painted rocks for the Kindness Rocks initiative and we made custom tote bags with everyone's wonderful and unique hand-prints. We hope to see everyone and MORE next year!  

We had nine local families in attendance with children and young adults with Crouzon, Pfieffer, Apert, and Treacher Collins syndromes. 

Check out these great pictures, too. Looks like everyone had an absolute blast. 

Calls, Cards and Care Packages Oh MY! Sign up Today!

Is your child having surgery? CCA wants to be there for you and your family.

You can sign up on this page for a "Get Well" card, a care package, or a call of support for you, your partner, or your child!

We will work to match your needs with our resources, to help you get through the experience feeling loved and supported. 

Wednesday, October 11, 2017

#WonderWednesday: Individual Donors Bring Wonder To Texas School Students

This story out of Texas is full of heart and ingenuity. The fourth, fifth, and sixth grade students of Breckenridge's South Elementary School received hundreds of copies of the book "Wonder" donated by individual donors. Donors included local businesses large and small, from Walmart to a local furniture store. 

On the first day of school, "Wonder" was revealed as the book the students would read. Each student picked up their copy and met their donor for a photo after the reveal. Each day the students begin the school day by reading "Wonder" as a community for thirty minutes. 

What a great idea! I hope this news story inspires other communities to come together on a similar project for their middle school students.

Happy #WonderWednesday everyone!

Monday, October 9, 2017

Martha's Vineyard Mother and Daughter Petition Fight for Insurance Legislation

Photo Credit: MVTimes.com

Just when I thought I could not love Martha's Vineyard more, I read this story and my heart burst open for my favorite island off the coast of Massachusetts. A mother and daughter, Ann and Criss Quigley, of South Hadley in Western Massachusetts,  and West Tisbury,  on the Vineyard, worked to create proposed legislation to have insurance companies cover medical and dental expenses for people born with congenital craniofacial conditions. The Martha's Vineyard Times quotes Quigley as saying,  "We hope our state legislators can close the loophole that allows insurers to deny coverage for treatment of medically necessary reconstruction for disabling craniofacial birth defects simply because they happen to affect the mouth and teeth.” All of which could not be more true. 

If you live in New England, or even if you do not, write letters in support of this proposed bill. If we can make it happen here in Massachusetts then maybe it can happen in your state, too. This is a story of hope. I hope you see and feel that hope through the Quigley's great work. 

Read more about it here in the Martha's Vineyard Times. 

Sunday, October 8, 2017

Save The Date For 2 Upcoming Kendra Scott Events in Alabama and Texas

Two great opportunities to shop and give back to CCA with our friends at Kendra Scott.  Come join us on Friday, November 17th in Huntsville, AL  at 5PM...

United States

(256) 217-7686


Tues., Dec. 5th in Dallas, TX at 5PM....
DALLAS, TX 75204
United States

(214) 528-4800

Thursday, October 5, 2017

#ThankfulThursday: Scott Clarke Cher-Toons

We are so grateful on this #ThankfulThursday for the beautiful artwork that our friend Scott Clarke created in his Cher-toons Activity and Coloring Books dedicated to our CCA family. Buy a copy today on Amazon today.
Proceeds from sales of the Cher-Toons Activity and Coloring Books goes to CCA to help with medical care for kids with craniofacial conditions and educational support for interested doctors, parents, schools, and children.#ChooseKind

 Thanks, Scott, for helping us raise awareness through your God-given gift for art. 

Tuesday, October 3, 2017

#WonderWednesday: Massachusetts Town Reads and Celebrate Wonder Together

Students at Furnace Brook Middle School in Marshfield, Massachusetts read and celebrate "Wonder"
Photo Credit: WickedLocal.com/Marshfield

By Kara Jackman 

I am so excited to share that students in my great state of Massachusetts are reading "Wonder." This article, featured in the Marshfield Mariner, the town's local newspaper, shows a community coming together around kindness, love, and understanding. 

The Furnace Brook Middle School read the book as part of their annual "One Book, One School" program. The book that is chosen to be part of the program is discussed in English, Math, and Science classes alike bringing the school community of over 1,000 students, teachers, and staff together on a single theme. And what better theme than Kindness. 

Sean Costello, chairman of the school committee, is quoted in the news article saying, “Having the whole community be able to come together and read the same book with the same important values and virtues is an irreplaceable experience for them,” said “It’s something that brings our community closer together.”

The community plans on seeing the film when it hits theaters in November. 

Monday, October 2, 2017

Ask The Adaptive Athlete: Face Masks and Basketball

By Kara Jackman

Last month on the CCA Kids Blog, we covered a story of boy who popped an incredible 3-point shot in the last few minutes of a basketball game. As the author of the Ask the Adaptive Athlete blog series, I felt a need to show, tell, and encourage all our budding basketball players to play one of the greatest games ever invented. If you have the will to be the next Lebron James, then there is a way for you to hit the court and be part of the action.

Basketball is a fast-paced, dynamic sport that requires very little equipment. The game does get pretty physical. Elbows are thrown, bodies running at high speed with 9 other guys around you fighting for the spherical ball things can get pretty crazy. No one wears pads, the bare minimum you see the average player wear for protection is a mouthguard. And as I learned last season, not all players wear those. Former Boston Celtic and current Cleveland Cavalier, Isaiah Thomas, took an elbow to the mouth in one of the final games of the 2016-2017 season. He was not wearing a mouthguard and subsequently lost a tooth during the game. Thomas was forced to have 9 hours of emergency dental surgery. Hours after the surgery he played in a game and scored over 50 points. After that weekend, he began wearing a mouthguard.

No mouthguard = missing teeth
Photo Credit: NBA.com

So how is it that you as a kid, or adult, affected by a craniofacial condition, a fragile face, and soft teeth, will be able to play basketball like a pro? Well, easily. You just need a mouthguard and a face mask.

Photo Credit: DicksSportingGoods.com

Many professional players wear face masks to keep their face in place. In fact, these masked men are so popular in the NBA that ESPN created a power ranking of players. Check it out here. (Oh, and here are lists compiled by USA Today and Sports Illustrated.)

Photo Credit: SI.com

Pro ballers wear them all the time. My first introduction to these masks as a young NBA fan was through the Los Angeles Lakers' James Worthy, and Detroit Pistons, Bill Laimbeer. Both were very physical and successful players. Worthy and Laimbeer wore the masks every time they hit the court. Others, like Kobe Bryant and the aforementioned King himself, Lebron James, wore them for short stints after catching an elbow, a knee, or having surgery on their face.

Therefore, if anyone says anything about your mask, all you need to tell them is that Russell Westbrook, Kobe Bryant, and King James wear one. Then drop a piping hot, "nothing but net" 2-pointer, and run down to the other side of the court with your eyes locked on the player that questioned you. Bam! Now, that feels good.

You are probably thinking, "I am pumped up. I am ready to play. I love watching basketball and now you are telling me I can play? Sweet!" Your next question is, "Where do you get one of those masks?" The easy answer is Amazon. But there is more to it than that. You need to know how much of your face you want to protect and how big and bulky you want to go.

Kobe Bryant
Photo Credit: AwwLife.com

James Worthy and Kobe Bryant wore a very small, simple piece of molded plastic like this one you can purchase at this website. While other players went for more protection, using something like this number from Amazon. This mask is larger, more noticeable, and probably protects much better. Ultimately, you must ask yourself these four questions to get the right mask for you:

Photo Credit: Amazon.com

  • How much of my face do I need to protect? 
  • What areas of my face are most likely to come in contact with the ball and other players on the court? 
  • What areas of my face need support, stability, and/or the most protection? 
  • What is my doctor's opinion on wearing a mask? Could it harm or hurt the work they are doing to rebuild my facial features, head, or body? 

No matter what you decide, do make sure you discuss playing basketball with a face mask with your doctor. I am not a doctor, only an athlete and sport enthusiast that wants to open up new ways for you to get exercise, gain friends, and express yourself through sports.

Thanks for reading this installment of Ask the Adaptive Athlete. Please forward any questions you have about sports and leisure activities to me at kjackman98 [at] gmail [dot] com. Let us know if you tried any of the suggestions written about in this series for the blog. We love to see and share success stories.

Happy Sporting!