Thursday, August 17, 2017

#ThankfulThursday: 10th Annual 'Links of Love' Scheduled for Friday, September 29, 2017





We are thankful for the 10th Annual Links of Love tournament that will take place on Friday, September 29, 2017, to benefit Children’s Craniofacial Association (CCA). Your funds raised through this fun event will help children born with craniofacial disorders receive the medical care they need from qualified surgeons to complete life-altering surgeries so they can talk, eat, hear, and see.

Firewheel Golf Park in Garland, TX will host golfers again this year. Registration begins at 11:30AM. We encourage participants to arrive early to check out the exciting auction items available for bidding, grab a box lunch, and to take a few practice swings before heading out on the course. A shotgun start begins at 1:00PM. Enjoy complimentary drinks while you play. After your round of golf, share a barbeque dinner with your golf friends, earn prizes, and find out who won the silent auction items. 



Golfers will be able to participate in a 4-man scramble for $125 per player, or sponsor a team for $500. Participants receive free lunch, dinner, and beverages on the course. CCA has different sponsorship packages available for those looking to gain some marketing in return. Sponsor names will be reflected on pin flags, hole signs, cart signs, banners, social media and in our printed newsletter with over 15,000 subscribers. Those unable to attend are encouraged to spread the word to their golf loving friends and you can even register to “sleep in” and still receive donor acknowledgement, a golf glove, a goody bag, and more!

Links of Love is in its 10th year and has been a very successful fundraiser for Children’s Craniofacial Association. CCA hopes to raise $25,000 this year. We need your help to make this goal a reality. Learn more about the tournament at our website, bit.ly/ccalinks

Wednesday, August 16, 2017

#WonderWednesday: Wonder Certified Kind Classroom





Teachers, students, and parents spread the word about the Wonder Certified Kind Classroom brought to us by Random House and Lionsgate. The publisher of the book and the production company behind the movie came together to create this website filled with a great resource guide, activities, and Facebook page to interact and learn from other students from other schools.  Get involved today!



Tuesday, August 15, 2017

Check Your Mailbox for the CCA Newsletter





It's time to check your mailboxes, because it is newsletter time. Read all the good news as we get closer to Retreat. Learn all about the great fundraisers, courageous stories, and fun events that are on the horizon.

Craniofacial Awareness Month Resources: CCA Has A New PSA



You can find our new Public Service Announcement below. Use it to spread the word about Craniofacial Awareness Month in September. 




Monday, August 14, 2017

The Professional Becomes The Parent





This piece, published in Thriving, a publication from Boston Children's Hospital features a disability expert turned mother of a boy born with Pierre Robin sequence.  This is her story about life on the receiving end of hospital care. She provides a unique, insider's perspective on something that new parents around the country experience nearly every day. Thank you Boston Children's Hospital for this insightful piece.


Saturday, August 12, 2017

Family Spotlight: Rast Family

By Denise Rast


Alexa turns 10 years old on September 27 Yes, double digits already. I can't believe it! It seems like yesterday we were bringing her form the hospital to our home in Riverbank, California. Alexa was born with Single Suture Right Coronal Craniosynostosis.  At birth I knew something wasn’t right, but was told by multiple Pediatricians that she was “squished from being born” and that I was “over paranoid.” God really had it on my heart to keep searching and after a few days we found Dr. Yang. Although he didn’t know what it could be, he said her face was asymmetrical, so he suggested sending her to a Neurologist for some tests.  One month later, she was diagnosed and within the hour I had googled and found CCA.  Back then there wasn’t all of this social media so CCA was our saving grace.  I called CCA and talked to Annie for what seemed like hours…and the rest is history. 

When Alexa was three she started having “episodes.” It was overwhelming. It was years of painful testing and she was so little.  She handled it all so well, and even though we still did not have answers she had been diagnosed with Benign Rolandic Epilepsy and Vasovagal Syncope. It wasn’t until she was in first grade that she looked at me one day and said, “Mommy, why do I have to do this? I don’t want to do this anymore.” It was then that she had realized this wasn’t normal.  Testing, hospital stays, doctors’ visits, this was not what her friends were doing.  My heart shattered and this was a teaching moment for me. I realized this moment was when she truly began to understand what it meant to have a craniofacial condition.


Alexa became an advocate for others with facial differences and for CCA, too. At the 2016 Retreat she stood up and pledged to raise $5,000.00 and she did.  She held a lemonade stand, an online auction, and Casino Bus Trip to raise that money.  Next, Alexa entered a writing contest where she had to write about an act of kindness. She wrote about raising money for CCA and won FIRST PLACE out of all the kids in the state of California. This past July we ran another fundraiser, a Charity Dinner, which grossed over $7,200.00 to help pay for CCA retreat scholarships.  Our local news did a number of articles on Alexa and her condition. We even had a float in our local Fourth of July Parade one year.  We try to always spread awareness and acceptance about all things craniofacial.  Our goal is to see more kids with craniofacial differences accepted for who they are, and not what they look like. 




The CCA Annual Retreat and Symposium means so much to our family.  Alexa, and her sister Hadley, get to see their friends and, well, I get to see mine, too.  It’s like a recharging station for my soul.  The 2017 CCA Retreat was eye opening.  This year we had to choose between 3 symposium sessions that we really wanted to attend. We chose the Craniosynostosis one.  Once again God was nudging me where He knew I needed to be.  I was astonished sitting in the audience, listening to the doctor speak.   He told us that our children should be followed by a Craniofacial Team until they are 30 years old. I was shocked because Alexa has never had a “team” and we were just told by the doctors to “call us if you need us, or if anything changes." All this information about annual scans and tracking her head circumference annually was news to me.  So when he started talking about the possibilities of the sutures reclosing and this causing a list of things including, headaches, seizures, and fainting spells, I felt like a failure.  I thought our annual check-ups were enough. I immediately sprang into action after that symposium session, got on the phone when we got back to California, and set her up with a Craniofacial Team at the University of California at San Francisco. Alexa will begin seeing this team of doctors in October. This symposium session is just one small reason why CCA and the Annual Family Retreat and Symposium day are so important.  These life-changing symposiums happen every year. 



Alexa loves God, and she is, as Matthew says in the Bible, the “salt” and the “light.”  She loves with all she has in her.  She is always smiling, but she is also shy and nervous about new things.  She loves competing in gymnastics and soccer.  She does amazing in school and always offers to help Mommy.  She is my little sidekick. I love watching her grow into the lovely young lady she is.   She makes me want to be a better person.  I am blessed to have two amazing daughters! 




Friday, August 11, 2017

Ask the Adaptive Athlete: Bicycling



By Kara Jackman

Ask the Adaptive Athlete is a new series on the blog that will feature your questions about how to make sports, outdoor activities, and adventure accessible for all of our CCA kids. Please submit your questions to karajackman@yahoo.com.

Dear Children's Craniofacial Assoc. I have a 10 year old daughter who lives with Aperts. She would love to be able to ride her bike but due to her hand issues she is unable to use the standard breaking systems on regular bikes. I am sure this is not the fist time you have come across this issue do you have any solutions to this problem.




Thank you for your question. There are a few options for braking systems for bikes. There are the standard hand brakes, coaster brakes, and some adaptive single-hand brakes that can be added to your daughter's bike.

Photo Credit:  Bike Forum

I think the best option is to try the coaster brake system, which are operated by the feet.  The rider pedals backwards to engage this braking system, located on the back wheel of the bicycle. Here is an article that discusses the pros and cons of coaster versus hand brake systems. There are a few articles that do not advocate the use of this mode of braking for kids bikes because bike enthusiasts feel they are not safe because children do not have the proper eye-to-foot coordination needed to operate the brakes.

I disagree. I think this may be a safer way to stop the bike than the hand brakes. It seems to be me that there would be less likelihood of the child going over the handlebars with an uneven stop through use of hand brakes.

Photo Credit: New Atlas.com


Now the other option is this single hand brake like the one featured in this article. This is assuming a lot, though. I am assuming that your daughter has one hand with stronger gripping ability than the other. This may not be true, but I at least want to introduce the concept. There may be other readers that might benefit from this braking option to adapt their bikes.

I would try the coaster brake system. Hand eye and hand foot coordination needs to be developed at some time, so why not now! Carpe Diem! Take some practice runs with the coaster brakes on, or near, some grass, while you run alongside your intrepid, future Lance Armstrong. See what happens. Experiment, make it fun and safe...but go for it!

Thursday, August 10, 2017

#ThankfulThursday: Honk If You Love CCA!




Cars  are a great way to get around town, but did you know they can help CCA raise money, too? Here are two ways you can say "thanks" to Children's Craniofacial Association that involve your favorite modes of transportation.  

One way to express your gratitude is through CCA's car donation program. You can help us by donating your unwanted car, boat, motorcycle, or other vehicle. Learn more about this program on our website.

The second vehicle to help us raise funds is to purchase a car raffle ticket. You could win a Jeep Wrangler, Dodge Ram, or Chrysler Pacifica. Buy 1 raffle ticket for $100 or 3 tickets for $250.

Wednesday, August 9, 2017

#WonderWednesday: Summer Reading By Some 'Wonder'ful People





Summer is the perfect time to do some reading. A book is the best companion by the pool, at the beach, or lake. Many people have written memoirs about their life experiences. There are quite a few great ones written by people whom have a facial difference. Writing was a great way for them to share their story of living with a facial difference.

This post picks up on last week's #WonderWednesday post about finding ways to tell our story and show kindness through creativity. I hope you find these books to be inspirational, but in the words of Levar Burton of the old PBS show"Reading Rainbow," "you don't have to take my word for it!"

Click Here to check out this list we found on Bustle.com


What are some books they missed? What is your favorite book? Has it helped get you through the difficult times, like during surgeries and procedures? 

Share them with us on Twitter (@CCAKidsTweet) or Facebook with the hashtag #CCASummerReads!



Monday, August 7, 2017

From the Bench with Francis: FABULOUS FACES AT SEA II: THE 2018 CRANIOFACIAL CRUISE, APRIL 1-8, 2018





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






Join us in April 2018 for our second Fabulous Faces at Sea Craniofacial Cruise, on the beautiful Norwegian Cruise Line vessel Norwegian Getaway!




With the help of my travel agent in the Denver, CO, area, I am organizing and hosting the Fabulous Faces at Sea cruise. We inaugurated this cruise in August 2016 as a way for individuals and families with craniofacial differences to get together as a group on a Caribbean cruise. For the 2018 cruise, we are targeting adults with craniofacial conditions (and the activities will be focused on adults), however families are just as welcome to join us. I would also encourage craniofacial medical and scientific professionals to join us.

There will be group-specific shipboard activities as well as a group shore excursion. Guest speakers will be announced soon. 

For the 2018 cruise, we will be sailing aboard Norwegian Getaway, departing Miami on April 1, 2018, and visiting Roatan (Honduras), Harvest Caye (Belize), Costa Maya (Mexico), and Cozumel (Mexico), before returning to Miami on April 8, 2018.

For more information, and to book, please contact my travel agent, Linda Eyer, CTC, at Highlands Ranch Travel in Highlands Ranch, CO. Contact her via email (linda@hrtvl.com) or by phone at (303) 791-2311, or toll free at (800) 275-4669.

On the August 2016 inaugural cruise, we had a number of group-specific activities both aboard ship and ashore. My mother accompanied me as I hosted our small group in a seminar where she and I answered questions about our experiences (her parenting experience and my life experience with Treacher Collins syndrome). On another day, we had an ice cream social. Our group shore excursion visited a beach and aquarium on the island of St. Thomas in the US Virgin Islands. Our 2016 cruise visited St. Maarten, St. Thomas, Tortola, and Nassau.

Here are some photos from the 2016 cruise. 









Friday, August 4, 2017

Chipotle Fundraiser in Dallas, TX August 16th, 5PM-9PM




If you are in the Dallas, TX area, join us to dine and donate to a good cause...CCA. Join us at: 

WHERE: Chipotle 
                  14715 Coit Road, Suite 102, Dallas, TX 

WHEN: Wednesday, August 16, 2017 5:00PM-9:00PM

Bring your smartphone or a copy of this flyer to show the cashier to let them know you want to donate 50% of  the proceeds of your order to CCA. 

Thursday, August 3, 2017

#ThankfulThursday: Picnic Planning Has Begun for Craniofacial Awareness Month

Chula Vista, CA Wonder Picnic




This #ThankfulThursday we celebrate you. This one goes out to all the organizers of a Craniofacial Awareness Month (CAM) Picnics and celebrations. Many have been scheduled Check out the list below organized by state:

MICHIGAN

Saturday, September 16th
1:00PM-4:00PM
Ben Celani Pavilion @ Bicentennial Park
35400 Seven Mile Rd.
Livonia, MI
RSVP, Kellie Dowd, kdowd22@gmail.com


Saturday, September 30th
4:00PM-6:00PM
"Spare a Few for CCA" Bowling Fundraiser
Hosted by the Anderson Family (Dave & Liz)
$20 per bowler/includes shoes, bowling, 2 slices of pizza and pop
$10 per non-bowler/includes 2 slices of pizza and pop
There will be a raffle beginning at 5:30PM for anyone who wants to participate. 


NEW JERSEY

Saturday, September 9th

1:00PM
The Merrill Family's House
16 Gallant Fox Rd.
Tinton Falls, NJ 07724
RSVP by September 1st to Gary Merrill, gmerrill@commvault.com
Pool will be open (weather permitting)
Bring bathing suit & towel to swim
Please email for additional details and to RSVP.


Keep an eye out on Facebook for more locations and dates as picnics planning continues. 

Wednesday, August 2, 2017

#WonderWednesday: VIDEO: 'Wonder'ful Way to Tell Our Stories

By Kara Jackman 

We have heard it said many times. We are all Wonders! What does that mean? How can we communicate how Wondrous we are?

Today, William showed me why he is wonderful!

I was truly touched by this video posted on the Cleft Lip and Palate Association in the United Kingdom's Facebook Page. I think it was an innovative way for this boy to tell his story.




I think this is a great way for kids to find some control in a life filled with little of it. Writing has always been my creative expression of choice. It is a way for me to organize my thoughts and feelings about what is happening in my world, medically and emotionally, to gain some perspective. Short video documentary check-in's, as William does above, is another great way to express yourself.  Create your own documentary of upcoming procedures and share them with the world. Through sharing our stories, the public becomes informed, the craniofacial community finds and creates more advocates, and hopefully bullying and teasing decreases. Hate is driven by fear and confusion. If people understand what we are going through during these surgeries, then we can kill hate. Kindness will prevail because others will understand our perspective.

There is more than one way to share your story. Video, painting, poetry, exercise, religious practices, and dance are just a few of the ways you can reach people on an emotional level.

What other ways help you cope and better understand who you are? What means of expression would be helpful to the general public to better understand people born with a craniofacial differences?

Monday, July 31, 2017

The Great Divide. Me and The ‘Other’ Mums






By Charlie Beswick


I don’t remember much about the first time I saw my babies. I think I had been in a numb daze. Still shocked and trying to process it all. Trying to wake myself up from the news which had just turned our world upside down. I certainly didn’t feel like a Mum yet!

I was soon back on the ward with the other mums. The proper mums. Good mums. I felt that I had nothing in common with them now and I resented them for that. With their perfectly formed babies and the lives they would enjoy together. For the pride and love that radiated from them. I watched them out of the corner of my eye with a detached wonder, as if they were on the television. From now on I knew that I would only ever watch others live the life I had spent the last 32 weeks planning.  I was bitter and yet empty at the same time. Grieving for the living and I know that sounds dramatic but trust me, it’s a grief.

The Mother you dreamed you would be is lost to you.

I had watched enough twin programmes to last a lifetime and had decided that I would be one of those carefree relaxed parents. The sort that just slung a baby on each boob while watching afternoon tv before we had a synchronised snooze. I knew I’d be a messy mother on account of the fact that Im a messy person. Not dirty I want to add! Just not overly particular about where I put stuff so I knew the house would be chaos. I quite liked the idea of being the token ‘twin mum’ at the local baby classes. “You know. Charlene..the one with the twins? Tells everyone how her "down belows" are still at teenager status after she had an emergency C-section” and people would laugh because I would tell that story to cover the fact that I was a little bit gutted to have had a Cesarean at all. Distract with Humour 101.

That wasn’t going to happen now. I didn’t know if or how I would feed my babies or if I would even want to. At the time, I didn’t give baby groups a second thought but weeks later, I knew it would never be something I would take part in. “You know. Charlene? The one who had the twin with half a face? Lovely girl. Shame”

The love you expected to flow from you like tears of elation isn’t there.

I am sure that for some mothers, their maternal instinct kicks in straight away and they know that every baby is a blessing. One with challenges just makes them even more precious. Yeah, that wasn’t me. I was struggling to digest the news that our lives had changed like a lump of grizzle on a steak. Stuck in my throat. I didn’t feel any love at all. Not for my babies, my partner or myself. In fact I would go so far as to say that I was rapidly beginning to despise myself as I was unpicking my pregnancy moment by moment searching for the cause. There were tears aright, but they were full of guilt and sadness.

Your mind is racing instead of resting.

Lots of the mums were sleeping on the ward. Resting after the wondrous miracle of giving birth (I still think its wondrous even when you have a c-section now by the way. Just because they come out of the sunroof doesn’t make you less amazing!)

I didn’t know how or what to feel but I knew how I ‘should’ be feeling. And I didn't. There were questions racing around my mind like birds in a cage all desperate to get out. Tweeting and flapping and too frightened to stay still for long enough to be caught. It was relentless and exhausting. When I did finally manage to fall asleep, I dreamt of it all anyway. There was no rest. There were only questions without answers.

The relationships you imagined in your children’s future are suspended. 

I am very close to my own mum (not my Dad but that’s a blog and an episode of Jeremy Kyle, on its own!) I always knew that I would be a firm but fair mum. An honest one that always gave the answers to even the questions that made me cringe (like the time I asked Mum what masturbation was as she made us all a spaghetti bolognese). I imagined being quite a good referee for the children as they inevitably fell out over the years and I looked forward to the friendship they would forge. Seeing each other through the milestones of childhood into adulthood. I would be at their side until they left me to start a life of their own and I would be SO proud.

It was all gone. We had no idea what quality of life Harry would have. Which milestones he would hit or miss. Whether he would be able to bond with Oliver and live anything near the life I had dreamed for them both. We were on unchartered territory and I was lost without a map.

But here’s the thing.


That Mother who was lost to me, she couldn’t have handled the life we have now. The Mother I am today is stronger and braver than any mother I could have imagined becoming. I love the Mother I am for my boys now and more importantly, they love her too.

The love that was lost to me at the start, and it took a while for me to catch my breath and work on this, is a love so rich and so fierce now that it consumes me in the most amazing way. I believe that I love my boys waaay more than I might have done had I had the life I took for granted. I am never complacent and I am always always grateful.

My mind still races, but that’s just life. Which Mother doesn’t have 300 things to think about at any one time? Now though, it’s the every day stuff. I don’t torture myself with the ‘what ifs’ and the ‘when did it happen?’ and generally I sleep deep and easy.

Our relationships aren’t the ones I had hoped for. There is no denying that. Do I wish they were? Honestly? Sometimes yes. When Oliver wants to be a play mate instead of a punch bag. The times I counsel Oliver through his middle school trials and Harry isn’t able to offer any brotherly support or encouragement. Having said that, it does mean I only have one set of awkward questions to answer when it comes to puberty and sexual health. Every cloud and all that.

Fear not.

What I’m trying to say is that all of those fears were just that. Fears. Not a prediction. Not a certain reality and just as our lives changed once, they have changed again. Several times. And each time I grow too and learn a little bit more about what I am capable of, how far I can be pushed, what a kick ass mother I actually am to my boys.

Hindsight is a wonderful thing and if I could say anything to myself back then it would be “Yes, this is shit. But it gets so much better and you will be so much stronger than you think you are now”.
And as for the other mums, well they have their share of dramas too. Of heartache and pain,trials and arguments and awkward conversations over meat based Italian dishes.  We are more alike than different in the end.

There are no ‘other mums’. Just us. Winging it and learning the ropes one day at a time.

Wednesday, July 26, 2017

#WonderWednesday: Changing the Face of Beauty



Sara Guests, a 26 year-old woman born with Dermatosparaxis Ehlers-Danlos Syndrome (EDS) redefines how we look at beauty and physical appearance. In this article, the readers learn more about this rare difference that effects the skin. Her body positive photos are an inspiration to us all to love the skin we are in. 

Read her story, originally posted to BoredPanda.com, here. 





Monday, July 24, 2017

Morgan's Inspiration Island in San Antonio, Texas



Taking a scroll through Yahoo News during lunch at work. We all do it. But I never expected to find this heart-warming story about a water park that specifically caters to kids with disabilities of all kinds. If you live in the San Antonio, Texas area, I would definitely check out Morgan's Inspiration Island. In general, I don't love water parks, but this place looks super cool. Look at that splash pad! It is crazy cool!

To learn more about Morgan's Inspiration Island read the article here.


Thursday, July 20, 2017

#ThankfulThursday: We Are Grateful for Our CCA Family!

Sandy and Drew Davis at Dulles Airport in Washington, D.C.
(Photo Credit: Drew Davis) 




By Sandra Davis

I recently took a trip to Reston, Virginia with my son Drew Davis. At least that's where I thought we were going. But as fate would have it, we landed in what I can only explain it to be as Heaven! Well if we weren't in Heaven we were only one floor down! Upon arrival I met some very special people! And we were told it was a safe zone! Leave your judgement at the door! Drew and I had arrived at the 2017 annual Children's Craniofacial Retreat! Being that it was our very first year we have ever attended, I knew immediately that we have missed out on years of amazing times and relationships! It actually looked like a family reunion! Hugs all around and huge smiles! 

What I found most interesting was all of the special little people and big people with facial differences. Yes, I said differences, not defects! We were there to celebrate, embrace and love on those differences! Because basically, don't we all look different?!!! One really amazing person, among many, that we met was named David Roche! David was so full of life, with a great sense of humor and a gift of gab! He shared his story of being born with a birth mark that eventually lead to having had to have his lips removed. But don't feel sorry for him! Through an incredible loving family, David learned how to love himself! He's cooler than most people I know and snagged a gorgeous woman as his wife! The most important lesson I learned from David was that he feels blessed to have been born this way because it made him look inward to find his true beauty! And he is beautiful! That beauty goes well below the surface to his soul and shows best through his eyes and his heart! One minute into his speech, I didn't really see anything different but one of God's creations made into His own image! I could have sat and listened to David all day! He was truly inspirational! It's such a shame that our society goes by standards set by a shallow group of people, like in magazines, that dictate to readers what beauty is! 

I experienced true beauty this past weekend in the hearts and souls of all I met! You felt free from ridicule and loved for who you are! Parents were happy to have someone else there that could understand their journey, children played together uninhibited and without the stares. Young adults with facial differences laughed and discussed their ways of navigating through life, the challenges of school, work, and relationships. Siblings were there also, sharing their experiences of growing up in a family with a journey most different than their peers; a tough journey sometimes, yet truly rewarding!

I only wish I had known about the kind of support that the CCA group provides throughout the years of raising Drew. We have a new family now! A safe place! A place where judgement has no stand! A world of new friends! 

My heart is so full and I want to help others understand that facial differences are just that....differences! It doesn't change who that person is on the inside. It doesn't change the talent one has or the desires of their heart. We are the same with just different packaging! I can only say that it was an amazing trip to see that even though my new friends may have to overcome obstacles that many of us will never know, they are still incredibly able to do whatever God has blessed them to do! I'm so beyond grateful to call this group family now and cannot wait until next year where we will come together for another reunion! 

Wednesday, July 19, 2017

#WonderWednesday: Gear Up Today!





Time to load up on 'Wonder' gear before the movie debuts. Head over to our webstore today to get everything from T-Shirts, bookmarks, pins to the book itself, to celebrate and share your love for all things Auggie Pullman. 

Pay special attention to our newest item is the ChooseKind vinyls. You can peel and stick them on anything including, car windows, water bottles, phone cases, and laptops. You can turn anything you own into a work of art and spread the message of kindness to others. 


Monday, July 17, 2017

My Brother, My Protector By Brittany Stevens



By Brittany Stevens

My name is Brittany Stevens, and I’ll be 27 in August.  I was born with Nager Syndrome, a rare craniofacial anomaly which features missing bones throughout the body, microcephaly, a short chin/jawbone, bilateral hearing loss, and about 25% of us have Intellectual Disabilities. I’ve had 37 operations, including a C1-C2 Spinal Fusion, bone added to both feet, 14 sets of ear tubes and had my chin lengthened.

The chin surgery truly changed my life!  Growing up with a short chin, weak palate and thumbs that couldn’t bend was challenging.  My speech was limited and I have intellectual disabilities.  During my early years, I was taught some basic sign language. My family, especially my younger brother Quinn Stevens, had to pay close attention to me in order to learn what I needed or wanted.  My brother probably understood me better than my mother...and she really knows me!  Ultimately, having chin and gland surgeries allowed me to stop excessive drooling, gave me the ability to eventually work, but more than that, I gained a voice, and haven’t stop talking since!

Living with Nager Syndrome has so many challenges, including seizures, and so little was known about this Syndrome in the early 1990s. Because of the multitude of complex medical issues in my early years, I received more attention than my brother.  He was scared at times, but he eventually understood that my rare syndrome was just a part of my life, our lives.

Quinn is three years younger than me, and also born in August.  We graduated from Northeast High School in Philadelphia, PA in 2011, and he went on receive a degree in Criminal Justice from East Stroudsburg University in 2015.  I loved going to concerts and events when Quinn played the drums in the high school and in his college marching bands, including a solo presentation at the world renowned Kimmel Center during his junior year of high school.  My brother is tall, handsome, and always protects me.

 Education is critical for special families.  I attended Early Intervention at Easter Seals, and was blessed to attend Philadelphia Public Schools, via the Life Skills Program.  The combination of great, creative special education teachers, awesome family support, and a Mom who became my fiercest advocate, I blossomed into the unique woman that I am today.  I presently work at the PATH Workshop (People Acting To Help), participate in all kinds of activities via Special Vacations, an organization that provides unlimited events for adults with disabilities, and I go away to adult camp one to two weeks every summer where I continue to learn work and life skills (Carousel Connections Camp).


I also enjoy the theatre, movies, church, coloring and traveling, especially to see my Children's Craniofacial Association and Foundation for Nager & Miller Syndromes families at the annual and biannual retreats!  The retreats have allowed my family and I to see the country and make lifelong friendships.  Each year each retreat is my favorite. I had the opportunity to meet Cher, and many other wonderful people over the years. Even better, my mother and doctors have learned how to keep me healthy.  To our new CCA families, “Welcome,” and to all the families I know all too well, I look forward to tickling and hugging you soon!

Written by Harlena Morton
Mother/Legal Guardian of
Brittany Stevens

Thursday, July 13, 2017

Infographic: Good and Bad Peer Pressure


Here's another great infographic from our friends at the Wooden Toy Shop in the United Kingdom. They have a whole host of  other infographics on many topics on kids and parenting. Thank you for sharing. We are very grateful. To show your gratitude, check out Wooden Toy Shop's incredible catalog of beautiful toys on their website today.


Everyone faces the challenges of peer pressure. From childhood, right through to adulthood, both negative and positive effects can be felt. Theres a lot of research and science behind the influence others can have on us, and in this infographic, we look at how you can help your child navigate the demands of these everyday pressures.
Armed with helpful knowledge about how peer pressure can influence decisions, how to recognise these situations and how to work out the best decision for you is a skill that can be learned. This infographic will set you and your child on the right path and make you more comfortable when peer pressure arises.


The Science of Peer Pressure
The Science of Peer Pressure by Wooden Toy Shop

Wednesday, July 12, 2017

#WonderWednesday: A Wonder...and He Doesn't Even Know It



An uplifting story featuring fashion and a facial difference. This English toddler with Treacher Collins Syndrome, became a model and an Instagram sensation for Lula's Dudes and Dolls, a handmade children's clothing store," according to this yahoo news article. Read all about it. Who knows, maybe we all could be the next top model just like this little guy!










Tuesday, July 11, 2017

From the Bench with Francis:Metabolic Stress and Cell Death in Treacher Collins Syndrome: A Promising Target for Future Therapeutics

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


Treacher Collins syndrome is a disorder of embryonic craniofacial development resulting from mutations in the gene TCOF1, the gene responsible for 90% of cases (more recent research has revealed two other genes implicit in TCS: POLR1C and POLR1D, which cause a minority of cases).

Over the years, scientists have dug deeper into the mechanism underlying the syndrome—the massive apoptosis, or cell death, in the population of stem cells (called neural crest cells) that are critical for formation of craniofacial bone and other tissues.

Investigation of the mechanism of the mass death of neural crest cells in TCS points to a probable metabolic oxidative stress response to the mutations in TCOF1. Insufficiency of TCOF1 has been shown to induce oxidative stress, in which oxygen free radicals, reactive oxygen species, and other toxic byproducts of oxidative metabolism build up in cells and damage DNA and other critical components in the cells.

Recent research has uncovered a possible mechanism that could one day be used to combat or prevent this damage to the neural crest cells: the use of antioxidants to counteract the action of toxic oxidative metabolic products and protect cellular components and DNA from damage. In 2016, a group of researchers including Drs. Dixon and Trainor found that supplementing normal pregnant female mice, and treating tcof1 mutant mouse embryos, with the strong antioxidant N-acetyl-cystein (NAC) scavenged toxic oxidative byproducts and prevented oxidative damage to DNA and other cellular contents, preventing cell death and craniofacial malformations that otherwise could have occurred. That same year, another group of researchers led by Dr. de Peralta also found success with antioxidant supplementation in zebrafish (another animal model for TCS), but also found that when the level of Treacle protein is reduced (due to mutations in tcof1), there is a corresponding reduction in levels of another protein called cellular nucleic acid binding protein (CNBP), which prevents increases in the levels of toxic oxidative products. They decided to overexpress (raise the expression level of the gene for CNBP) the protein, which led to reversal of oxidative damage to the stem cells for craniofacial tissues. In this way, CNBP overexpression acted similarly to the antioxidant in protecting these cells from fatal metabolic stress and preventing TCS-like craniofacial anomalies.

In conclusion, the use of antioxidant supplementation in pregnant mothers could be key to preventing TCS and related craniofacial anomalies.

References:
de Peralta MS, Mouguelar VS, Sdrigotti MA, Ishiy FA, Fanganiello RD, Passos-Bueno MR, Coux G, and Calcaterra NB. (2016). Cnbp ameliorates Treacher Collins syndrome craniofacial anomalies through a pathway that involves redox-responsive genes. Cell Death & Disease 7(10): e2397.
Sakai D, Dixon J, Achilleos A, Dixon M, and Trainor PA. (2016). Prevention of Treacher Collins syndrome craniofacial anomalies in mouse models via maternal antioxidant supplementation. Nature Communications 7:10328.

Saturday, July 8, 2017

Big IGive Summer Promotion New Members Earn $5 for CCA




Summer shopping can help Children's Craniofacial Association grow our donations. New members' summer shopping can help even more!

Every new member who joins to support your organization by July 15th and makes their first purchase by July 31st earns a $5 Bonus for Children's Craniofacial Association!

So, Tell-A-Friend about iGive today, and encourage all of your supporters to do the same! 

Spread the word by posting on Facebook or share on Twitter. Send an email! Use this join link in your social media posts and email messages.  https://www.iGive.com/ccakids. Word of mouth works, too!

Remember the referred member MUST be new to iGive. They must join iGive by July 15th AND make their first purchase by July 31st, 2017. New member must join by using your Tell A Friend or Cause JoinLink to qualify.

Thursday, July 6, 2017

#ThankfulThursday: Connecticut Children's Craniofacial Awareness Event

Here is a special message from some friends in Connecticut. They are holding a fundraiser and awareness event at Rose's Berry Farm in Glastonbury, CT. 



July is National Cleft and Craniofacial Awareness Month and we are celebrating by hosting a picnic at Rose’s Berry Farm in South Glastonbury on 7/22/17. The main event will be the premiere of our very own documentary, “Beyond the Face”. Everyone is welcome, admission and picnic food is FREE. I have attached a flyer which provides more details(bounce house has been removed from the event but more activities will replace it). I will send a printed invitation and flyer to you if I have your address. Please send me an email if you’d like extra flyers.

Raffle tickets and some activities will provide opportunities for anyone to donate towards the Craniofacial Special Purpose Fund. If you would like to contribute by providing a raffle prize please let me know, it would be greatly appreciated.  
I am available if you have any questions.

CONNECTICUT CHILDREN’S CRANIOFACIAL AWARENESS EVENT
Saturday, July 22nd, 2017
3:00PM – 6:30PM  (We plan to play the “Beyond The Face” video at 5:00PM)

ROSE’S BERRY FARM
295 Matson Hill RD.
South Glastonbury, CT

Wednesday, July 5, 2017

#WonderWednesday: Penny Wars at Local Elementary School Leads to Donation & Scholarship


Children's Craniofacial Association would like to thank the Burr School in Chicago, Illinois for jumping on the kindness train.  We are grateful for their acts of charity which all began after they read the book Wonder. Thanks to their "penny war," where all of their classrooms squared off placing pennies in jars, they raised over $1100 for the Pediatric Craniofacial Foundation in just two weeks. 

There next charitable goal is to fundraise for a CCA Starfish Scholarship, the funds raised for the scholarship would allow a family to attend the CCA Annual Family Retreat at no cost. Learn more about the Starfish Scholarship here.

Here is the story told by the Burr School's PTO President, Carol Romanenko:


"We watched the Dankleson's on WGN-TV's morning program, I contacted them about the possibility of speaking at our school.  In the past our school has had a theme for the school year, this year's theme was #EmbraceDiversity. Last school year our theme was #ChooseKind.  To start off our summer reading program, we purchased for every student in 3rd through 8th a copy of the book Wonder to read.   Since reading the book we have adopted the #ChooseKind in our everyday lives.  

After everyone had read the book, the Dankleson's were awesome enough to have a school-wide assembly for our children. It was wonderful!  Pictures appear below from their visit to our school. All they asked in return was a donation to the Pediatric Craniofacial Foundation. We decided to have "Penny Wars," involving all our students to raise the money for the donation. For "Penny Wars" we gave each class a container to collect money. The pennies count as positive points, while silver and paper dollars count against the total.  During a 2 week period, students jammed pennies in their classrooms' jars, and then tried to sabotage the other classrooms with silver and dollar bills.  In that time we are proud to say that we were able to raise $1158.00!