Friday, July 21, 2017

Charity Buzz Auction - Concert & Meet and Greet with Cher in Las Vegas




We have another exciting Charity Buzz auction item available to benefit CCA. Win 2 tickets to see Cher in concert. The tickets include a backstage meet and greet and great seats at the show in Las Vegas, Nevada.  If you live, or a willing to travel to Las Vegas on November 11th at the Park Theater at the Monte Carlo Casino for this one-of-a-kind experience, then bid today 

Act now, the auction ends on Thursday, July 27th.

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

#ThankfulThursday: Alexa's Charity Dinner and Dance in Modesto, CA July 22 at 5:30PM



We are grateful this Thursday to Alexa Rast and her family. Read on to learn more about their exciting dinner and dance happening this summer.
Please join the Rast family for a dinner and dance to benefit CCA this July! The Rast family has been fundraising for CCA since 2007, after seeing the impact the Annual Family Retreat has on children and families with craniofacial conditions.
This July they are hosting a charity dinner and dance in Modesto, CA at Season's Event Center Saturday, July 22nd at 5:30PM.  We need you to recruit your friends and business associates to sign up to join in the fun. You can also contribute a silent auction, or raffle item to help benefit CCA. 
Denise Rast has come up with some amazing prizes and sponsors which will make the dinner one to remember. 

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

Raise Funds for CCA From the Comfort of Your Home



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

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


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!  








Tuesday, July 4, 2017

Win A Car, Change A Life




CCA Kids is hosting a car raffle for a chance to win a Jeep Wrangler, Dodge Ram, or Chrysler Pacifica through September 30, 2017. Only 1000 raffle tickets will be sold. Raffle tickets may be purchased for $100 each or $250 for three tickets. All proceeds benefit the programs and services offered by Children’s Craniofacial Association. More information about the opportunity to win a car and help a child and the official rules can be found here 


Buy Raffle Tickets Here





The winner of the car raffle will be drawn on October 1, 2017. The winner will be notified by phone. Taxes, cost of delivery, and additional fees are not included as part of the prize. The winner is responsible for these additional costs.

CCA Adult Nick Wiese, and his family spearhead this event. Wiese was born with Apert Syndrome, a genetic disorder that affects the skull, face, feet and hands from properly fusing and growing. He found CCA as an adult. His close-knit family supported him through many corrective surgeries, and Nick felt completely at home when he arrived at his first Retreat, meeting dozens of other families affected by facial differences. Wiese wants to help the next generation of kids that were born with craniofacial conditions through this car raffle. “I share my life story and how I was bullied and how it felt. To me, doing that is pure joy because it lets CCA Kids know they're not alone, that someone has gone through what they might be going through,” he said.



Buy Raffle Tickets Here


Each year approximately 25,000 children in the United States are born with or develop some form of facial disfigurement. The funds raised at each of these fundraising events goes to support medical travel for children with craniofacial conditions that require reconstructive surgery. Since our children’s cases are so rare and unique, 80% of our families do not live in the same city as their surgeon or specialist. CCA is the premier organization that assists families on the craniofacial journey. CCA provides financial assistance for the ancillary costs of medical care and provides funding for travel, including airfare, lodging, and food.

CCA also uses funds raised to host the Annual Family Retreat and Educational Symposium, a four-day event for families affected by facial differences to gather, network with one another and exchange ideas, develop lifelong friendships, and enjoy the chance to feel totally accepted for who we are, not what we look like. 

Buy Raffle Tickets Here


Monday, July 3, 2017

Pamper Your Kids The Right Way

By Amy K. Williams 

Amy Williams is a freelance journalist based in Southern California and mother of two. As a parent, she enjoys spreading the word on positive parenting techniques in the digital age and raising awareness on issues like cyberbullying and online safety.

“I WANT IT NOW!” yelled my son as he pummeled his fists at the shopping cart.

Heat rose up my face, as other shoppers stopped and glared at us. By this time, he was in a full-fledged temper tantrum in the middle aisle of the grocery store all over a bottle of pop. As I took a deep breath, I tried to calm my nerves so I could deal with my littlest guy who was doing his best to channel his inner Veruca Salt. You know her, she’s the epitome of a spoiled “bad nut” child from Willy Wonka fame.





Now, here I was face-to-face with a demanding child who felt he was entitled to anything he wanted and I was left waiting for dancing Oompa Loompas to start singing. In that moment, under the unforgiving fluorescent lights of Aisle 3, I had an epiphany of sorts. My child was becoming selfish and entitled. And he’s not alone.

The Problem with Overindulging Children

In fact, 71 percent of Americans feel that our “millennials” are selfish and another 65 percent feel this generation of children is entitled. Within the last few decades there has been a shift in our society where we try to give our kids all of their wants and desires. Whether we are helicopter or tiger parents, it should be no big surprise that raising kids can be complicated. Those times where we get to spoil our little ones is often the highlight of our day.

We love our little ones and enjoy giving them a treat every now and then. After all, pampering our kids by giving them what they want is the fun part of parenting. Unfortunately, our gifting and splurging can actually do more harm than good. I witnessed this first hand as my milk grew warm and my tater tots defrosted among the bloodcurdling screams in Aisle 3. Somewhere, I crossed the fine line into overindulgence. Now I faced the consequences, forced to regain control over my spoiled child.

Education and child experts have long been stressing the importance of cultivating intrinsic motivation within our sons and daughters. They have warned for years that rewards, gold stickers, and bribery will do little to help instill a love of learning, or desire to behave for the long haul. This means that all of our treats, rewards, and praises may be backfiring, causing kids to assume they are entitled to accolades merely for doing what is expected. Unfortunately, these undesirable behaviors are often due to our own actions as parents.

Pampering Our Kids the Right Way

Far too often, we are overly concerned with giving our sons and daughters everything they want. This is especially true, when we want to make our kids happy as they wrestle with self acceptance and motivation. It’s easy to get caught up in the daily struggles and lose perspective of what our children really need: love, guidance, and us.

Listed below are 3 ideas to pamper our children without overindulging them:

Spend time with our kids. Our boys and girls might not want to admit it, but they crave our attention. We need to make a conscious effort not to squander these precious childhood and teen years shopping or pacifying children with electronics. Parents must strive to be involved, ask questions, and show a genuine interest in their well being.

Instill empathy by helping others. One way to help children learn to appreciate what they have is to show them the world beyond their front doors. Sign up to pack after-school backpacks with food, serve at a local shelter, or raise awareness for a cause they believe in. Teaching a child to help others might be the key to helping them find happiness in relationships and life's simple pleasures.

The Gift of experiences instead of material items. Any child can have the newest pair of name brand jeans or shoes. However, not everyone will get the opportunity to learn how to bake kolaches with Grandma’s recipe, hike a trail in the mountains, try a monthly food subscription, take a road trip, or zipline down a ravine. Instead of wasting money and time on things that will eventually be thrown away invest in their hobbies and build memories together.





Looking Ahead

Needless to say, after that meltdown at the grocery store, our family made some radical changes in how we use treats and rewards. We now carefully consider the true value of trinkets and gadgets, weighing the impact beyond the monetary cost. We try to choose experiences rather than items, and find ways for our family to give back to our community. 

Still, I worry about a repeat episode of our family's experience in Aisle 3.  

What tips do you have for other families who want to embrace a new way to reward kids and intrinsically motivate them?



Saturday, July 1, 2017

You Have A Chance To Win A Car - Buy A $100 Raffle Ticket TODAY




Children's Craniofacial Association is holding a car raffle and you could win your choice of a Jeep Wrangler, a Dodge Ram, or a Chrysler Pacifica! Only 1,000 tickets will be sold, so scroll down to the bottom of the page and BUY YOURS NOW!