Tuesday, July 17, 2018

#WonderWednesday: 12-year Old Entrepreneurs in New Jersey, Inspired By 'Wonder'


Students at the Academy St School in Dover, NJ were kind enough to donate to CCA after completing a series of projects that raised money for the non-profit organization. As part of an economics unit, 60 sixth graders formed 12 companies that competed with one another to earn the most money. The project called BizWorld helped students understand the economy and gave them the ability to help others, too. 



Priscilla Wellborn explains BizWorld this way, "We use this project at the end of the year and it is a big hit. Companies make and sell products, using every component of the entrepreneurial cycle... design, manufacture, market, sell. Students learn to keep ledgers and pay for expenses. They learn that they need to work in team to accomplish their goal. We usually make about 1,000 in profit, sometimes more."

Wellbourn and her students specifically chose to donate the funds they earned through the project to CCA because they recently read the book "Wonder." Auggie Pullman, the main character in the book, was born with Treacher Collins, and the sixth graders wanted to help an organization that helps real kids like Auggie. Wellborn's students felt the book and movie was " amazing." They really connected  and loved it."

After all the work on the project was complete, there was only one thing left to do: donate the money. CCA teen, Alyssa Rieger accepted the check on behalf of CCA for a whooping $1,985.80. Impressive! Alyssa was born with craniosynostosis who hopes to become a Child Life Specialist at a children's hospital. Right now she is a rising sophomore at Warren County Technical School studying Child Development with the hope that she will brighten the days of children born with medical challenges. Most of her surgeries took place during the ages of 10-14. In her spare time Alyssa enjoys bowling and is a member of her volleyball team. 

Thank you Academy St School in Dover, NJ and to Alyssa for accepting this check for us. We are truly grateful for all that you have done. 












Tuesday, July 10, 2018

#WonderWednesday: Jonathan Siebert Shares His Story and the #ChooseKind Message






Hello!  My name is Jonathan Siebert and I have been talking to students in the United States of America and around the world about the book "Wonder" since January. I share with them my real life Auggie Pullman story.  I have talked to students in 50 States as well as Pakistan and Australia.  One night I had an amazing idea to spread awareness to “choose kind," stop bullying, and educate others to accept people’s facial differences. My video chats with classrooms have made me so happy.  The feedback I’ve been getting is that I am changing people’s lives. It also was a good way for me to get through a tough time since my father passed away in March. I have also talked to classes in person, which have created memories I will never forget. One of my favorite experiences in the classroom was teaching Zumba after telling my story. I am a certified Zumba instructor. Wonder has changed my life and I pledge, and hope you do too, to #ChooseKind. 



Jonathan in action speaking to students

Skype session

More happy and enthralled students listening to Jonathan


Saturday, July 7, 2018

CCA Creates Opportunity for Community at Annual Retreat

By Kara Jackman 



Another Annual Retreat and Educational Symposium is in the books. After days of reflection, it struck me that Annual Retreat and one of our attendees children's book have a lot in common. 

Patricia Simon, author of two children's books and Registered Nurse in Illinois, published Simon and the Buddy Branch in 2017. I acquired a copy shortly after returning home from the 2018 Annual Retreat and Educational Symposium in Salt Lake City. I was struck by the similarity between the experience I just witnessed among our families and the one Simon describes in her book through Simon the cardinal's description of the Buddy Branch for his new friend, named Buddy. The Buddy Branch is a place where everyone belongs no matter what their differences...just like Annual Retreat. The text from her book reads...





"I have an idea," said Simon "Let's call this branch the Buddy branch." 

"What's a buddy branch?" Buddy asked. 

A buddy is a friend like you," Simon explained. "The Buddy Branch will be a special place for birds to meet and make friends. If you are ever feeling alone, just sit on this branch. Another bird will see you and join you. Lean on him or her in times of need. Friends can lift you up. What do you think?" 

"Good idea!" the birds agreed, tweeting their approval. 

Both Retreat and the Buddy Branch are beautiful spaces for complete and radical acceptance of all people (and animals)!

There is such joy in those spaces we inhabit during the Annual Retreat weekend. Such joy in the small things from the mundane like helping a fellow retreat attendee apply sunscreen to  the magnificent like the true release of dancing the night away like no one is watching, because no one is. I dance my best at Retreat, because we inhabit a zero judgment zone. 

A community space like Annual Retreat provides must be create, cultivated, and nurtured. CCA creates the opportunities for our community to grow. They provide the structure, the organized activities and meals that lead to late night conversations with friends and families, sitting outside under the stars, or in the lobby on comfy couches. The network we build together extends beyond the four days we spend together every year during the last weekend of June. Soon, after Annual Retreat ends, the Facebook friend requests come rolling in during the days and weeks that follow. The Facebook phenomenon is one that I find to be the most remarkable, unspoken by-products of our retreat weekend. On Facebook and other social media platforms, we stay together in communion with one another, sharing our struggles, triumphs, accomplishments, good and bad news. In times of need, we hold each other up. In times of success, we cheer each other on. There is nothing more beautiful than watching all of this play out, day after day, between our annual gathering. The bonds are maintained through tight connections of the world wide web that we are leveraging for good each time we comment on a post in support of one another. 

I hope everyone enjoys and makes great use of the CCA network, the Buddy Branch, if you will, that CCA built in the form of Annual Retreat. We hope that we may continue to widen the circle for more families to join. We are a positive, resilient, and fun group. Each and every person reading this is part of what makes these descriptors come to life.  All of us are important to the community's strength today and in the future. Please stay positive, keep supporting and educating one another through the craniofacial journey which we all share during this next year. 

I look forward to seeing you all in Scottsdale, AZ in June 2019, where we can build another four days of fun for everyone. 

Thursday, July 5, 2018

MORE Reflections on 28th Annual Retreat in Salt Lake City



Ed. Note: I culled a few more retreat reflections from Katie Whicker and Retreat OG, Erin Richmond. These two range from the funny to the sentimental. I hope you enjoy them in equal measure for all that they are. -Kara J. 





By Erin Williams Richmond 

I am home and now that I have hugged my boys and reflected on the weekend, I am going to try my best to find the words to describe yet another amazing, memorable weekend at the Children’s Craniofacial Association annual retreat. CCA has been a part of my life since I was 3 years old. In 1985, Cher starred in the movie Mask, a film about the life of a boy who had a rare craniofacial condition. My very first experience was a meet and great with Cher at her Heart of Stone Tour in 1989, followed very soon after by an event in Washington DC to promote awareness of craniofacial disorders and advocacy for much needed insurance coverages. It was at that time when several families who spent time with Cher realized as they connected and created lifelong friendships how very important it was to make those connections for the well-being of both parents and children. The first CCA retreat was born 28 years ago from a very private and emotional discussion in Cher’s hotel room about how great it was to finally be in a place together where our families felt safe and understood. My family was part of that conversation and just a short time later we participated in the very first retreat in Orlando, Florida. Char and Jill along with others have been an important part of my life ever since. We were not able to attend every retreat but when we did I always loved being with my old friends and making new ones. It's remarkable, and actually surreal to be able to witness (although really too young to actually remember haha) a small group of families come together with an idea and to see how over the years this amazing organization has grown to exceed the capacity of some pretty huge hotels. It's incredible. It's hard to put into words. On Saturday, I took a step back to soak up the moment and it brought me to tears. 
I have found my safe haven. My home with those that I love and who love me unconditionally is my safe haven. Beyond the walls of my house, I am faced with many obstacles and uncomfortable situations daily but thankfully I am strong enough to overlook and overcome them. My other safe haven is with my CCA family. Once year, I am blessed to be surrounded by children and adults with craniofacial differences and their families. Living with Treacher Collins isn’t easy but it’s an amazing life that I live and wouldn’t trade it for anything. To flourish, we all need a safe place, both physically and emotionally, to come home to. For many of us, the annual CCA retreat is our safe place to come home to. It’s our sanctuary. We are surrounded by others who “get it.” It’s four days where we aren’t stared at. You walk into a large room and you don’t get that high school anxiety about who to sit with and if someone will like you. We don’t get asked questions about how we look. We aren’t judged. No one presumes incompetence or lack of intelligence because of how we look. We are confident. We talk to strangers, we dance, we sing, we crack jokes. We feel empowered. We lift each other up. It’s a place where inner beauty, personality, intelligence, talent, sense of humor is valued and cherished above all else. Someone tells you that you look beautiful and it feels genuine. You feel loved. You feel like you’ve known these individuals for a lifetime. You become family with someone you met for the first time yesterday. Lifelong friendships are formed and they flourish year after year. Tears are shed … happy tears and tears of sadness or fear. The smiles and laughter spreads faster than wildfire and our cheeks hurt for weeks. For us, kindness isn’t a choice we make … it’s an inherent part of who we are. I come home immersed in the superficiality of the world around me yet I have such hopes and dreams for a better, kinder place. The families that I have been with for the last four days, some of which I’ve known for 28 years, are the most beautiful, kind, talented, courageous, intelligent people I have ever had the pleasure of knowing. While life has gotten busy over the years, the lifelong friends and support system from CCA have never faltered. I consider myself incredibly lucky to be a part of the CCA family. “Courage. Kindness. Friendship. Character. These are the qualities that define us as human beings, and propel us, on occasion, to greatness.” I am blessed to be a part of this one big happy CCA family, to have the CCA retreat as my safe haven, and to know such great, wonderous people! 
Thank you Erica Crabtree Mossholderr, Annie Burt ReevesCharlene Char Duitsman SmithJill Gorecki PattersonKara Jackman and so many others for making this retreat a memorable, safe haven for us year after year. You are appreciated and loved beyond measure. 

Wednesday, July 4, 2018

#ThankfulThursday: An Annual Retreat Attendees Reflect on Their Experience



By Sabrina Robineau
The young girl on the left spent most of her childhood looking in the mirror, asking God why she was born different. She would constantly compare herself to her friends, her siblings and the rest of the world. She hated her reflection in the mirror and wished she had a "typical" face. She often felt trapped, hidden behind a face that didn't match who she was on the inside. 

There was no social media when she was growing up. There was no way to easily search "craniofacial syndrome" on Google. There were no online networks to join for support. This girl felt completely alone, not knowing there were others out there who were born just like her. Others who had the same physical traits as her and who had the same surgeries that she'd gone through. 
Flash forward 20 years later... that girl is now surrounded by hundreds of kids and adults who were also born with a craniofacial syndrome. Her world has been opened up and it is all thanks to CCA - Children's Craniofacial Association. 

Attending my 1st CCA Retreat back in 2005, at 16 years old, it changed my life for the better. Not only did I finally get to meet other kids with Pfeiffer Syndrome and make new friends, CCA became my family. For the last 13 years, my CCA family has seen me through the best and worst times in my life and they have always been there supporting me. 

At my 13th CCA Retreat last week, I paused a few times to look around and take it all in. It was the biggest retreat yet - 163 families!! I was just in awe. When I saw the kids running around, laughing, playing and chatting without a care in the world- it brought me back to my 8 year old self who once felt so alone and thought she was the only one born like this. It makes me so grateful for the kids that have found CCA at a younger age, so that they won't ever feel as alone as I had felt. 

CCA also gave me something else that I always dreamed of but didn't believe was possible, which is... true love. If it wasn't for CCA, I never would have found the love of my life, my fiancĂ© Freddie, who I can’t wait to marry and start our life together. 
The CCA retreats have helped me to accept myself for what I look like on the outside. It helped me to embrace my unique traits and love myself. The outside world can be tough and challenging. I still face judgments from the public. I still have my moments of doubt, and bad days where I feel like hiding.
That's why attending the CCA retreat every year is so important to me. I get to step back into the safe world for a few days and feel so much love and acceptance. 

This year's retreat was incredible as always. Even though I didn't feel like my usual self because of the past rough year I've had, I'm still so glad I got to see my CCA family and to feel surrounded by love and support. I truly can't imagine my life without these retreats and the amazing people that take part in them. 

A big thank you to the CCA staff who worked so hard to put on an amazing retreat. I love and appreciate everything you do for us!!! Can't wait for next year!!

Saturday, June 23, 2018

Welcome to Salt Lake City!

Photo Credit: myrockymountainpark.com


Everyone is excited about this year's Annual Family Retreat and Educational Symposium presented by Primary Children's Hospital. I hope this short guide will give you more information about places to eat, explore, and meet any needs that may come up during our visit to Salt Lake City. 

Let's start with the fun stuff...

Photo Credit: Bon Appetit


Coffee, Dining and Day Trips!

Here is an article from one of my favorite magazines, Bon Appetit. The locals tell us the best places to eat, drink, and have fun in Salt Lake City. Enjoy the great advice gathered by Bon Appetit.  (Sorry in advance for the relentless popups on this website.)

Photo Credit: riteaid.com


The Necessities - Pharmacies, Urgent Care, and Hospitals

Despite our best efforts, we are all going to need to pick up something we may have left at home, or we may need to seek medical care while we are on vacation. Here are some suggestions. In a pinch, you can also ask the hotel concierge for suggestions, too.

Pharmacies 

Hospitals

Urgent Care 



Supermarkets and Superstores

♫Here they are to save the dayyyy...!!♬ Whether you need some snacks or special food for your loved ones, here is a list of the nearby supermarkets and superstores.

Target 

Whole Foods

Trader Joes

Costco


I hope this list of links helps you enjoy all that Salt Lake City has to offer. I am confident there are many other places to explore. Do not hesitate to pick up free travel guides, speak to our Salt Lake City-based families, the hotel concierge to seek out their suggestions. If there is trouble in your hotel room or accommodations are required of the hotel, please speak to the Little America front desk staff. 

Safe travels everyone. Then let's have some fun. 



--Kara Jackman 

Thursday, June 14, 2018

Study Participants Needed for 'Born A Hero' Study...See If You Qualify



Lots of research is happening across the country. Born A Hero needs your help!  See if you qualify for this research opportunity. Read the flyer below and email Carolina Sommer with your name, phone number, email address, and age to receive a questionnaire. Thanks!

Wednesday, June 13, 2018

Craniofacial Researchers Across the Country Need Your Help!



Many researchers across the country are conducting studies to better understand craniofacial conditions. You can help improve the future of medical care for those born with facial differences by sharing your personal experiences. 
There are countless examples of research papers that benefitted from participants like YOU! Recently, Gabriella Miller and the Kids First Pediatric Research published a study thanks to the assistance of people affected by orofacial clefts. Read their study results here Orofacial Clefts Genetics Study. This publication is informative for medical professionals to better understand how orofacial clefts occur. 
You can help provide insight for current studies to pave the way for major breakthroughs in treatment AND to assist medical providers move toward a more patient-centered care approach.
YOUR willingness to participate is one vital way to give back.


CURRENT OPPORTUNITIES
Review the links below to see if there is a study that you are eligible for and can contribute your family or personal experience to help brighten the future for those born wth facial differences.

ALL CRANIOFACIAL CONDITIONS
Directed at CCA Retreat Attendees and regional Utah families
At the University of Utah and Primary Children's Hospital, we are trying to better understand the impact craniofacial abnormalities have on children and families.  This study will help us both understand and measure the many ways this disorder has affected your child and your family. 
If your child has a craniofacial abnormality (CFA), you may qualify to participate in a study.  We are working with families to create a quality of life (QOL) questionnaire.  The CFA quality of life questionnaire will help providers understand how CFA impacts quality of life of families and those who care for young children with CFA. The goal is to give providers better understanding of the impact the disorder has on families’ lives, while also providing a framework for discussing and solving the problems families face.  We hope the development of this instrument will help other families impacted by CFA .
We will be conducting some focus groups during the upcoming CCA Retreat in Salt Lake. We hope you will share your family’s experiences with CFA with us, so that it can be reflected in the instrument we develop.  The survey here will allow you to sign up for a focus group. It also asks for a limited amount of information about you and your child, to allow us to plan the focus groups and analyze the transcripts. All personal information is very carefully protected.
If you have additional questions, you can email our study team at Cleft-Research@hsc.utah.edu. The lead researcher and doctor for this study is Jonathan Skirko, MD
Families and individuals with Pfeiffer Syndrome, Apert Syndrome, Crouzon Syndrome, and Muenke Syndrome are invited to inquire about the reserch being conducted by Dr. Jabs and Carolina Sommer with the Born A Hero, an organization empowering kids born with Pfeiffer Syndrome. 
APERT SYNDROME
Dr. Drorit Gaines in California is conducting research on the connection between ADHD, Autism and sensory disorders among children born with Apert syndrome. All that is required for this study is an Apert Syndrome diagnosis, copies of your medical records, and the completion of a questionnaire. Click the link above for more information. 
GOLDENHAR SYNDROME

In the past two years, we at Baylor College of Medicine and Texas Children's Hospital have begun a genetic research program to look for the genetic cause(s) of Goldenhar Syndrome (also variously called Hemifacial Microsomia and Facio-Auriculo-Vertebral Spectrum). You may be aware that very little is known about the genetic explanation for these rare disorders, despite their variable effects on the eye, the ear, the face, the limbs and skeleton, and occasionally the kidney, among others. Also, these conditions vary widely from one family to another, so we expect that there is more than one genetic explanation for the same "diagnosis”, thus making the task of unraveling the true explanation(s) in any one family considerably more challenging! Many families have already had conventional genetic testing, which usually yields almost no useful information.

As part of The Center for Mendelian Genomics at Baylor College of Medicine, I am pursuing the genetic explanation(s) for the Goldenhar Syndrome and related conditions.

Since you as parents have an essential role in caring for, monitoring, and guiding the education of these children and young adults, I would appreciate most sincerely your joining us in this effort. Without your dedication and willingness, we cannot achieve the understanding that both the families and many scientists and physicians have wondered about for decades! There is no cost to any family for the detailed genetic analyses that will be done.

If you are interested in helping your child and in joining this research program, please contact me. Nothing of this scale has ever been done for this spectrum of disorders.
Please call my academic office at (713) 798-3030 or email me at rlewis@bcm.edu. 

If I am not in the office, please leave a voice mail with your name and a phone number for me to return your call. Also, please mention Goldenhar Syndrome or Hemifacial Microsomia in the message. I will call back and explain the details!
Thank you! Our team here is most eager to proceed with this unique and exceptionally important research program!


Richard Alan Lewis, M.D., M.S. Professor, Departments of Molecular and Human Genetics, Ophthalmology, Medicine, and Pediatrics, Baylor College of Medicine and Texas Children's Hospital




UNDIAGNOSED
The overall goal of this project is to connect rare and undiagnosed families directly with genomic researchers to discover all of the genes that cause rare craniofacial diseases, and use this information to increase the rate of rare craniofacial disease diagnosis. 
Participants will complete an online form about their family and childhood onset rare and genetically undiagnosed craniofacial condition. From there, a member of our study team will set up a live video conference with the family to explain this research study and make sure that all of their questions are answered. With permission, we’ll reach out to the patient’s doctors directly to collect a copy of their medical records. Then, we’ll mail a sample collection kit directly to their house. Upon returning the kit to The Broad Institute of MIT and Harvard, samples will be registered in our tracking system and DNA will be processed for exome or genome sequencing. We will then begin analyzing data, comparing it to healthy individuals and identify which mutations in the genome are common, and which are rare and potentially related to their craniofacial condition. If we find results that explain the underlying cause of the rare condition present, we will request a second sample that will be sent to the Partner’s Laboratory for Molecular Medicine (LMM) in Cambridge, MA and will be confirmed in their clinical lab. LMM will provide a clinical report explaining the genetic findings, and these results will be shared with you and your local doctor. Click the link above for more information. 

Tuesday, June 12, 2018

#WonderWednesday: Elementary School in Newington, CT Dances to Raise $4,000




John Patterson Elementary School in Newington, CT danced the night away on June 11th to generously raise money for CCA. The students raised a whopping $4,000. On June 5th, they performed a reader's theater performance of the book "Wonder." Many thanks to the students and teachers of John Patterson Elementary. Check out these great pictures from the event. 



Dance-A-Thin in full swing!

(Left to Right Andrea Obert-Hahn and Denise MacDonald

Special thanks you to teachers, Andrea Obert-Hahn and Denise MacDonald for organizing the fundraiser. 

Please see the video below of the reader's theater to see there dramatic performance of R.J. Palacio's book. We are so grateful for your acts of kindness and celebration of a book that means so very much to our kids and families.



Thursday, June 7, 2018

Study Participants for Rare Genomes Project at the Broad Institute



The Rare Genomes Project, a study conducted by the Broad Institute, is looking for participants for a research study on rare, undiagnosed or unnamed facial differences. The genetics of those born with craniofacial conditions may tell some of the story behind why these syndromes occurred. I interviewed researcher, Kassandra Nealon about the study via email. She was kind enough to answer questions about the purpose of the study, what participants are required to do, and what they expect to accomplish with your help. Learn more about the Rare Genomes Project on their website


What is expected of the research participants?

Participants will complete an online form about their family and childhood onset rare and genetically undiagnosed craniofacialcondition. From there, a member of our study team will set up a live video conference with the family to explain this research study and make sure that all of their questions are answered. With permission, we’ll reach out to the patient’s doctors directly to collect a copy of their medical records. Then, we’ll mail a sample collection kit directly to their house. Upon returning the kit to The Broad Institute of MIT and Harvard, samples will be registered in our tracking system and DNA will be processed for exome or genome sequencing. We will then begin analyzing data, comparing it to healthy individuals and identify which mutations in the genome are common, and which are rare and potentially related to their craniofacial condition. If we find results that explain the underlying cause of the rare condition present, we will request a second sample that will be sent to the Partner’s Laboratory for Molecular Medicine (LMM) in Cambridge, MA and will be confirmed in their clinical lab. LMM will provide a clinical report explaining the genetic findings, and these results will be shared with you and your local doctor.


What kind of samples would they need to provide? (Blood, urine, cheek swab, saliva swab, etc.)We will send a collection kit to enrolled families who can choose to have their blood drawn at a Quest Diagnostics Patient Service Center (www.questdiagnostics.com/appointment) or by a phlebotomist of their choice (including at their local physician’s or hospital’s lab). Saliva kits are also available for participants who are unable to have a blood draw. The sample collection kits will be mailed back to the Broad Institute Genomics Platform, where DNA extraction and DNA sequencing will be performed.

What do you plan to do with the information? / What will the study look at?

The overall goal of this project is to connect rare and undiagnosed families directly with genomic researchers to discover all of the genes that cause rare craniofacial diseases, and use this information to increase the rate of rare craniofacial disease diagnosis. We believe it should be easy for rare and undiagnosed patients to participate in research. The vast majority of rare and undiagnosed patients have not participated in research, because doing so often depends on traveling far distances to a doctor’s office. We hope to provide the community with an opportunity to have a direct impact on our understanding of the genes that cause rare disease, by allowing patients to participate, no matter where in the country they live.

Who is eligible to participate?

Patients and families with a rare and genetically undiagnosed condition who live in the US, understand English, had appearance of severe symptoms before the age of 13 and are currently under the care of a doctor that is helping to understand the cause of the patient’s condition are qualified to participate in the craniofacial rare genomes project. At this time, we are unable to include patients and families that have a suspected or known environmentally caused condition, have any condition known not to involve a genetic link or have a genetic diagnosis that fully explains the patient’s condition.

Are there any costs to participate?
 The cost of the sample collection kit, sample collection at Quest Diagnostics, genomic sequencing, and clinical confirmatory genetic testing will be covered by us.

Tuesday, June 5, 2018

From the Bench with Francis: Discussing Research on Embryonic Development of the Face with UCSF



    
From the Bench with Francis A regular column on craniofacial 

news and technology by Dr. Francis Smith


Dr. Francis Smith interviews his colleagues and fellow researchers at the University of California San Francisco where he received his doctorate in 2012. Smith is currently a post doctoral fellow at University of Colorado. This conversation discusses development of embryos, what happens during cellular development for facial differences to occur, dental research in development of craniofacial conditions, and genetic networking and communication in dental and medical research.


Friday, June 1, 2018

Ask The Athlete: Custom-Built Helmets For Our Kids


By Kara Jackman 

Question: My son was born with a craniofacial condition that affects the shape of his head. 
Where can I buy a custom made bike or sports helmet to fit my son's head?  

Answer:

Great question! Kids need helmets for so many sports including, biking, hockey, baseball, and even rock climbing if they are so inclined. I believe the sky is the limit for all kids with sports, which is why I hope this information on helmets is helpful.

I began the journey to learn more about custom made helmets at everyone's favorite search engine: Google. I also emailed a few companies, but received limited responses (read: no reply). My Google search yielded less-than-stellar information, too. Still, I found one article that gave me hope. This Gizmodo article written in 2014 describes a company called Bell helmets that created helmets using 3D camera and printing technology. The key is finding a helmet company that does custom molding to the head. It appears that Easton - Bell did make these helmets according to the Gizmodo article. This was an exciting use of modern technology. Unfortunately, when I clicked on the links to the Easton - Bell site embedded in the last paragraphs of the article, the links were dead. I emailed them and called, too, but got no response from the company. The project must not have been able to sustain itself. 

So back to the drawing board it was...This time I set the computer aside and picked up the phone. I spoke with Jim Brookshier, CPOLPO, an orthotist. He told me that he can acquire a mold of the head through 3D, laser technology, just like the folks in the Gizmodo article. Typically, Brookshier creates these scans for cranio-remolding helmets, but the same technology can also be used for safety helmets, too. For a bike helmet, the laser scans are then provided to Brookshier's technicians to build the helmet. Someone was doing this work!  


Cranio-remolding helmet Photo Credit: OrthoAmerica

Brookshier says"There are many things to take into consideration when building a helmet of this kind. 'Is there a shunt? What other face or areas of the head are prone to pressure? "What is the extent of the activity and will the helmet need to have a full-face guard? He also advises people to "check their state Department of Transportation guidelines, too." Finally, he recommends speaking with an equipment manager for your local high school or college sports teams to determine how they go about sizing a helmet for baseball, lacrosse, or hockey players. 

Beyond calling the professionals at OrthoAmerica or our friend Jim, the best advice I can give at this point is to go to your hospital's prosthetics and orthotics shop and start asking some questions. Determine whether they can build something specific to your child's head. Also, contact engineering schools or design engineers to get them interested in this need.  Thirdly, bonus points if you can get an orthotist and engineer in the same room to discuss the helmet. The need is there for our craniofacial kids, but also for bike riders, football players, race car drivers, and others that want better fit and protection. 


Thanks for the great question. If you have a sports, athletics, or activity related question, please send us a private message on the CCA Facebook page or to kjackman98 [@] gmail [.] com. 





The Mighty June Writing Prompts

Here are the writing prompts for June. I hope these inspire some strong soul searching and pen scratching!




1. Has a form of self-care ever actually made you feel uncomfortable? For many of us, self-care can feel a bit unsettling, even though it’s in our best interest! Describe a moment you practiced “uncomfortable self-care.” What was the outcome?
2. Do you have a symptom of your condition you find hard to explain to others? What is the symptom? Now, challenge yourself to find a creative way to explain it — or, describe a moment when you found people’s misconceptions about it frustrating and what you do to combat that.
3. Sometimes, a weird or unlikely “sign” signals to us that we are not doing well. Describe a moment you realized you were not OK, despite coming off as “OK” on the surface. What made you realize you needed to ask for help or take action?
4. Stereotypes exist around almost every condition. What do people think your condition “looks” like, and what does it actually “look” like on you? You may want to include a photo to illustrate your point!

Tuesday, May 29, 2018

#WonderWednesday: Macey Atkins Spreads Kindness in Louisiana




Macey Atkins spoke about Wonder and her life with a facial difference in front of a classroom full of students at Covenant Christian Academy in Houma, Louisiana. Here are some photos from her visit, presentation, and making new friends in Louisiana. Keep spreading kindness, Macey. Great work!  

Macey, and her mother Stacey Atkins, were also instrumental in donating toward our Tony Stewart Foundation Tony's Kids Can Campaign, helping CCA raise $10,000 in one week thanks to anonymous matching donation.

Stacey and Macey have had a quite the month of May, living the mission and supporting CCA. Thank you so much for sharing your story and helping our kids! 





Friday, May 25, 2018

Family Spotlight: Araceli Kimberlin


By Araceli Kimberlin



I was born and raised in Dallas, Texas. I love my city and couldn’t imagine living anywhere else. I actually live in a house three houses down from my childhood home, where my parents still live. I always say I’m a 1,000% city girl. However most of my extended family lives in New Mexico, which is where my parents met and spent a good portion of their lives. When my parents decided to move to Dallas before I was born, I don’t think they realized how significant that move would be to the health and well-being of their first daughter. They ended up moving 10 minutes from one of the best hospitals in the world for medical help for kids with facial differences.

Growing up, I knew about CCA and often attended the yearly Christmas parties. But my family and I weren’t really involved in the organization. When we found out that our second son Aaron had Crouzon Syndrome like I did, I wanted his experience to be different. I wanted him to have a community where he could feel accepted and where he could feel like others could relate to him and the issues he was facing. I knew we needed to become involved in CCA. I attended our first CCA picnic last September and met so many wonderful CCA staff members and parents of kids with facial differences. It was amazing. Ever since then I’ve looked for every opportunity to be more involved in this wonderful organization. 

Thankfully, I knew what Aaron would go through because of my personal experiences with Crouzon Syndrome. As a child growing up with facial differences, life was tough. You can’t “hide” or “change” your differences. Many times I felt like no one could relate to me and what I was going through. No one understood what it was like to look different even though I was the same as they were on the inside. However, I never viewed my facial features as a barrier. I decided I was going to live my life as “normal” as possible and wanted to do what every normal kid at that age did. I excelled in school, I was a dancer, I had a ton of friends, and I joined many extra-curricular activities, many of which I held leadership positions. 


Today, my mom and I are unraveling my surgical history after walking through a couple of surgeries with Aaron. I think we estimate that I had about six in my childhood. The first one was when I was nine months and that one was to fix hydrocephalus. My last surgery was at 14, right before my fifteenth birthday or quinceanera. That was hard. I remember taking my quinceanera picture with a slight smile because my jaws were wired shut. I should have probably had another surgery at 18 but after the last surgery at 14 I decided I didn’t want anymore. My parents were amazing in supporting my decision. 

As a child, Crouzon Syndrome was just something I had. I had to go into surgeries for it and it was just a part of my life. Having a child with it opens up a whole new world. All of a sudden I have become a doctor, advocate, nurse, insurance bill specialist, protector and so many other things I wasn’t when our first son was born. I remember sitting in shock when the doctors told me they suspected he had it. I couldn’t believe it. It never crossed my mind that Aaron could be born with it since our first son didn’t have it. I was sad, frustrated, and angry. But then I realized the quality of life he would have. It was going to be amazing, because my life is amazing and still is. I know I’m going to teach him to love his life just like my parents taught me. I’m honored that I get to tell Aaron I’ve walked in his shoes. I know what it feels like to have Crouzon Syndrome and I’m going to be there for him. 

My hope for my children is that they grow up to be confident, strong men of God. I want the story of their lives to give others hope. I want them to find purpose in their trials and use it to inspire and make a difference in the lives of others. 

I absolutely put my hope and trust in Jesus, the one who saved me, accepts me and loves me, facial differences and all. My husband and two boys inspire me to become a better woman, wife and mother. I want to grow everyday and be a better person today than I was the day before for them. I also live my life based on Philippians 4:8 in the Bible. I find joy in life, even in the struggles. There is ALWAYS something to be joyful about. 

Part of living out that joy is by spreading kindness. Kindness to me means taking a moment to put myself in the shoes of someone else. If
a person was mean or rude to me I always give them the benefit of the doubt. Maybe they just received some devastating news. Maybe they lost someone dear to them. If someone is happy I want to celebrate with them. One day I will be celebrating and I would love for them to be happy for me. Kindness is a way of life, not just a fleeting feeling. And with everything in me I believe the more kindness I pass out, the more kindness I will receive.