Tuesday, September 18, 2018

A Sibling Reflects Through Poetry Oh His "Best Friend"



By Dillon Lucas

Editor's Note: Seventeen-year old Dillon Lucas wrote this deep, heartfelt poetic reflection about his brother, and best friend, Brody. Brody was born with Apert Syndrome. Dillon has watched his younger brother manage and overcome many surgeries. In this piece, he reflects on what the parental and sibling experience mean to him. He shows us the effect it has had on his family and himself through descriptive imagery and rhyme. Thank you for your thoughtful poem, Dillon. Writing is a beautiful way to honor our feelings, families, and personal experiences. You have captured them well. Keep on writing! Continue to share your spirit with the world.

My Best Friend

We have put him in the arms of a surgeon.
We have slept upright in a hospital chair.
We have listened to the beeping of machines.

We’ve been thankful.
We’ve smiled through the tears.
But with all of this going on all we can feel is fear.

We aren’t able to do anything when the time comes.
All we can do is sit there, hope and pray
That hopefully he will come out of that room one day.

The doctors, about to take him in the room.
I turn to my mom and she sheds a tear.
She leans to him and whispers “My sweet boy there is nothing to fear”

I hold back the tears after looking at my mother.
All I can do is wonder.
On what those surgeons will be doing to my little brother.

Monday, September 10, 2018

Experiencing Acceptance At Retreat

By Rasheera Dopson 

(Editor's Note: Rasheera sent us this reflection about our Annual Retreat and Educational Symposium in the days following our time at the Little America Hotel in Salt Lake City at the end of June 2018. Thank you for your thoughtful words, Rasheera.
Scottsdale, Arizona will play host for our families next year. )




I have read about my syndrome many times online, but there is nothing better than being in a room full of people who look exactly like me. The feeling is indescribable. My take away from the Annual Family Retreat and Educational Symposium this year is this one sentiment --  “some things can’t be taught but have to be experienced.”

For most of my life I have always felt a void. I felt as though I never fit in or belonged. For a long time I looked for acceptance in other places. And even though I have read about acceptance and kindness in different books I could never really understand what that truly meant until I entered a room filled with acceptance and kindness at retreat. CCA is different. They take the idea of acceptance and kindness and translate it into a actual experience. Experiencing first hand the genuine love, kindness, and acceptance at the CCA retreat has healed my heart more than any reconstructive surgery.

Sometimes people misconstrue thinking that if we just looked normal then all of our problems would go away, but that is so far from the truth.  I would proudly walk around with the same face and smile as long as I knew that there were others that loved and supported me despite my facial difference. Like all individuals with a craniofacial condition, I am not looking for perfection, but instead looking for acceptance.



My thoughts may seem a little sporadic, but that’s love sometimes; it can be a little unconventional and spontaneous. At this year's retreat I experienced genuine love. It was like God was showing me through CCA his love for my difference and disability. It's so important for spaces to be created for children and adults with facial difference or disabilities because it exposes each child to an environment that celebrates who they are. 

Sunday, September 9, 2018

Nathaniel Newman Seattle Children's Pulse Feature




The Newman family has some exciting news to share on behalf of Seattle Children's Hospital where there son Nathaniel is a patient. Dr. Richard Hooper has refined a surgical procedure called a subcranial rotation distraction that helps people born with Treacher Collins Syndrome breathe without a tracheostomy. The updated blog post about Nathaniel Newman's journey includes a scholarly article about the life-changing surgery that Nathaniel and other TCS patients have undergone. Nathaniel's father, and CCA Board member, Russel Newman writes about Nathaniel's progress after the surgery, " It really is amazing how Nathaniel is thriving since the procedure. He has grown 5 inches and gained almost 20 lbs in the last 10 months. He sleeps effortlessly 8-10 hours a night with no assistance. Energy through the roof. I think all of the kids treated by dr hopper are seeing similar results." 




You can find the journal article and a video in the middle of the Seattle Children's blog post at this link

Russel feels, "in my mind, and according to the scholarly article, changed forever how TCS Kids with complex airway issues will be treated."






Saturday, September 8, 2018

Educate Yourself On Your Time With Our Overviews and Syndrome Booklets





We have all your information needs covered with our educational resources. They are available 24/7 to help you understand the complexities of everything from cyberbullying to How to handle conversations about your facial difference. The syndrome booklets, written, by qualified medical professionals explain conditions in terms that everyone can comprehend. We look forward to adding to this collection of resources in the near future. For now, please review, share, and celebrate all things craniofacial with these useful documents. 




Thursday, September 6, 2018

Links of Love Golf Tournament, Thursday, September 27th



Thursday, September 27 will mark our 11th Annual Links of Love golf tournament, the Children’s Craniofacial Association’s DFW fundraiser which raises money for children and families affected by craniofacial conditions. We use this event to bring awareness to our community about the mission and programs of CCA. The funds we raise from sponsorships and participation will go directly towards serving CCA families. This is our 11th year and we hope it will be the biggest yet! 



in

ks


We will kick off the day with registration, starting at 11:30 AM - Be sure to get fitted for your complimentary golf glove, sponsored by Credit Union of Texas, and pick up your boxed lunch to enjoy before or during course play.

Shotgun start at 1:00 PM. Photos will be taken of your team on the course and we'll have CCA Kids in attendance. Contests are included in the registration price. After a fun round of golf, we'll have BBQ at the clubhouse and give out the cash prizes to the winners!

There will also be an AMAZING set of raffle baskets. You do not need to be present to win. We will have 5+ amazing packages in the raffle including: the Golf Package, the Food & Liquor Yeti Cooler, the Women's Basket, the Family Fun Package, and the Men's Basket. Each package is valued at $500+!

We hope to see you there! 
Sign up today!

Join Us for the Dallas CAM Picnic on Sun., Sept. 16, 2018 at 12PM




**Updated date and time: Sunday, September 16th, at 12PM at Sandy Lake Amusement Park**


It's not too late to join us for the upcoming Dallas Craniofacial Acceptance Picnic on Sunday, September 16th 12PM. Please join us for a day of  fun with friends old and new. 

The Dallas CAM picnic kicks off CCA’s nationwide celebration to bring awareness to individuals affected by craniofacial conditions. Our venue, Sandy Lake Amusement Park, is located in Carrollton, TX. The day will be filled with access to all of the fun amenities at Sandy Lake, from thrill rides to kiddie rides, mini golf, and arcade games. UJ the DJ will play all of your favorite songs while you dance the afternoon away with new friends. CCA will also offer face painting, rock painting, a visit from a costumed Disney character, and opportunities to bond with other families in the craniofacial community. New this year, a barbeque lunch will be provided to all who come for this special Craniofacial Acceptance Month picnic. CCA promises a fun afternoon for everyone. CCA promises a fun afternoon for everyone.

Here are some photos from last year's CAM picnic.










Monday, September 3, 2018

Meet the McGowans: Tom, Melissa, Abigail, Theresa & Josephine

Meet The McGowans: 



The McGowan clan lives in Canonsburg, PA, which is just south of Pittsburgh (Let’s go Bucs, Steelers, & Pens!). Tom works in the pharmaceutical industry, and Melissa is a teacher/grant writer turned stay-at-home mom. Let’s be honest, though. You don’t want to hear about them, so let’s talk about the kids (who keep them very busy…and tired).

Abigail (Abby) is five years old and was born with Pfeiffer syndrome, but she sure hasn’t let it define her. She is thriving in kindergarten and is currently involved in swimming and soccer. She also enjoys playing at the park, drawing pictures, reading, playing games, having dance parties, and playing pretend with her sisters. She also feels it is very important that people know her favorite color is orange and her favorite princess is Ariel. She says she wants to be a doctor when she grows up, and her craniofacial team has strongly encouraged her in this goal. This November marked a big milestone for Abby: one-year, surgery free!
L-R Reese, Josephine, and Abigail

Theresa (Reese) is three years old and attends preschool three days a week. Reese is involved in swimming and soccer as well, and she enjoys coloring pictures, running outside, playing with dolls, watching movies, and playing with the camera on Mommy’s phone. Her favorite color is “lellow” and her favorite princess is “Belle and Cindelella.” When she grows up, she wants to be a mommy and a teacher…but her biggest goal is to figure out how to spend as much time as possible playing on the iPad.

Josephine (Josie) is 18 months old and stays at home full-time with Mommy. She thinks she’s older and bigger than she really is, but she does a pretty good job keeping up with the big kids. Josie loves to read books, cuddle, play at the park, and copy her sisters. She also enjoys Family Swim at her sisters’ swim school, and she is quickly showing us that she is the fish in the bunch. Every time she goes underwater, she comes up smiling and wanting to jump back in again (and again, and again, and again…). She doesn’t have a favorite color or princess yet, but she does have a favorite accessory: hairbows. She pats the top of her head and fusses each morning until she gets a bow in her hair. What a little diva.

Last year, the McGowans worked together to hold a Wonder advanced screening. It was a WONDErful evening spent raising awareness of craniofacial differences, telling others about CCA, and enjoying the movie.

Read more about Abby's journey on Children's Pittsburgh blog. This entry was written by Melissa McGowan, Abby's mom. 

Sunday, September 2, 2018

The Mighty Prompts for September ...And Poetry





1. Let’s encourage kindness. Describe a small but significant moment of kindness that brought some warmth to your or a loved one’s tough day. You can describe something you did for someone else or something someone did for you. What do you want your readers to take away from this moment? If you respond to this writing prompt, use the hashtag #KindnessChallenge at the end of your post.

2. We all know what it’s like to feel lonely. Especially when you or a loved one is dealing with a health challenge, isolation and loneliness can be quite common. Describe a moment you felt alone — how did you cope with this, and what do you do to remind yourself you’re not alone? What would you tell someone who feels like this? If you respond to this writing prompt, use the hashtag #AloneTogether at the end of your post.

3. Self-care is all the buzz right now — but what does it really mean? Tell us what self-care means to you as someone with a condition or the loved one of someone with a health challenge. List the realistic ways you practice self-care, or highlight one creative way you do something for yourself. If you respond to this writing prompt, use the hashtag #SelfCareChallenge at the end of your post.

4. September is Pain Awareness Month. Describing pain is often one of the most difficult parts of chronic pain — whether it’s physical, emotional or mental pain. What’s a creative way you describe your pain to doctors, friends, family, etc. Do you describe it differently based on the person you’re speaking with? If you respond to this writing prompt, use the hashtag #ExplainMyPain at the end of your post.

The Mighty is also asking for poetry posts. Please write and use the hashtag  #MightyPoets when posting to social media. We do not want to miss your words and experiences. 

#WonderWednesday: A CCA Adult Reflects on Her Viewing of "Wonder"





Editor's Note: Our friend Lia Burton took a 10-movie challenge on Facebook. For 10 days in August she posted reflections about her favorite films in her Facebook statuses. Her final film review was about "Wonder." I read it and asked if I could share it with everyone in our CCA community. She agreed. Please read her words and thoughts on this important film. 


It's the last day and I couldn't leave Wonder off my list! The book was a huge deal in the craniofacial community. I read it, met the author, got to see a few staged readings, and have blue #choosekind bracelets all over my apartment. Several of the actors, including Jacob, came to CCA retreats to meet some "real life Auggies" before filming the movie, but had so much fun doing "research" that they keep coming back just to hang out. The movie was going to be a big deal for our community no matter what, but when it finally came out, it was so exciting to see it actually do well and know that tons of kids across the country saw it! 

It's a sweet story that accurately captures some of the highs and lows of being a kid with a facial (or any kind of obvious physical) difference. My mom, who is so much like the Julia Roberts character, cried through the whole thing and then couldn't sleep that night because she couldn't stop thinking about our real life and how authentically it was reflected in the movie.

This movie is not just for our bubble though, the true target audience is kids who know or might someday meet someone who is different from them in any way. By the grace of God, I always had more friends than bullies and am so grateful for it because I know that, unfortunately, that isn't everyone's experience. Even though I consider myself lucky to have had such good friends, I don't think of them as martyrs who sacrificed their time on poor me as some act of charity. I think they were simply wise enough to realize that having a unique face wouldn't preclude me (or anyone) from being a good friend. That wisdom is what made them truly wonderful people, and is what I hope every kid absorbs from this movie!

Thank you for joining me on this movie challenge journey and reading my long self-indulgent explanations! 

Tuesday, August 28, 2018

Shop for CCA, Add The IGive Button Today




Help Childrens Craniofacial Association with free donations!

Shop online with iGive.com. Right now, iGive is giving out bonus donations! New members who join by 9/15 can get an extra $3 donation for Childrens Craniofacial Association. The stores make this possible because they want you to like them and shop till you drop. There's over 1,900 socially-responsible stores helping to make donations happen.

I hope you'll give it a try. To learn more or sign up now, use this link: https://www.iGive.com/ymVqd

Shop Today!


Install the IGive browser by following this three, easy steps!


Shopping is easy. When you go to one of your favorite retailers that is a member of IGive universe, the button you installed on your browser will pop up, prompting you to click it, and begin shopping on for all your favorite goodies!

 


Friday, August 17, 2018

Help CCA Raise Funds During North Texas Giving Day on September 20, 2018



SAVE the date for #NTXGivingDay This year please donate to help us raise money during North Texas Giving Day. The largest state also has the largest heart. Hundreds of organizations located in Texas participate in this day to promote charitable giving. This year we celebrate on September 20, 2018. Set a reminder on your calendar to go to this page to donate on 9/20. 


#NTXGivingDay

2018 Craniofacial Awareness Picnics



 Here is the current list of our 2018 Craniofacial Awareness Picnics. 

CALIFORNIA
Sunday, September 16th
11:00am-4:00pm
The Quinonez’s Home
16077 Chella Dr.
Hacienda Heights, CA  91745
This will be a Potluck Picnic. Please sign up below.
RSVP by September 8th. Dorina Watkins, watkinsfamily1996@gmail.com or Courtney Vysocky, cvysocky@gmail.com

MICHIGAN
Saturday, September 15th
1:00pm-4:00pm
Michigan Craniofacial Awareness Picnic
Ben Celani Pavilion at Bicentenial Park
35400 Seven Mile Rd.
Livonia, MI 48152
Magician will be performing around 2:30.
RSVP, Kellie Dowd, kdowd22@gmail.com
Below is a link to the event's Facebook page

NEW JERSEY
Saturday, August 25th
3:00pm
The Merrill's Home
16 Gallant Fox Rd.
Tinton Falls, NJ 07724
Please join us for a pool party and an afternoon of fun! Food and drinks will be provided. Please bring your bathing suits, towels and a dessert.
RSVP by August 17th to Gary and Nancy Merrill, gnt18@yahoo.com

OHIO
Saturday, September 22nd
10:30am-3:30pm
Christmas in September at Santa's Hideaway Hollow
15400 Bundysburg Rd.
Middlefield, OH 44062
Bring your family and come visit Santa's Elves, Reindeer and village of shops, fish at Reindeer Lake, listen to a story and Christmas music, participate in a sing-a-long and more! We will have a cookout lunch at NOON.
A wheelchair accessible trolley and golf carts are available to transport you from the Parking area to the North Pole, and also available during your visit to help you and your family get around the property.
We look forward to seeing you and Merry Christmas!
Questions? Contact Elf Valerie valhurstoh@gmail.com

PENNSYLVANIA 
Saturday, September 15th
2:00pm-6:00pm
465 Scott Ridge Rd, Harmony, PA 16037-8833
Please visit this event page for additional details.

TEXAS
September 8, 11 AM-1 PM, TEXAS (DFW) PICNIC
Sandy Lake Amusement Park
1800 Sandy Lake Road
Carrollton, TX 75006
BBQ Lunch will be provided as well as a day of FUN with a DJ, games and more!
RSVP by August 31st
AReeves@ccakids.com
Toll-free: 800.535.3643
Dallas area: 214.570.9099









Thursday, August 16, 2018

Fueling Your Body For Post Surgical Recovery



I am always looking for innovative ways to keep my food intake in check. I eat little processed food, or sugar. I mostly consider myself a paleo with a dash of grains. This is a choice I made with some of my doctors because they know eating good fats like avocado, olive oil, and coconut oil with proteins and vegetables can decrease the amount of time it takes for my body to recover from surgery. I'm am far from perfect at this way of life. Still, I want my body to be running as optimally as possible, thus a low inflammatory lifestyle is required. 

But how do you do this when you are on a post-surgical liquid or soft food diet? Most recommended foods are overcooked pastas, ice cream, pudding, applesauce, Ensure, and foods that are filled with sugar. Yuck! Thankfully there are more options out in the forms of protein powder that are plant-based and animal-based protein. You can find those at Whole Foods or any natural health food store. Your pharmacies may carry them in the vitamin aisle. 

Additionally, our friends at Real Food Blends make a solid, great product specifically made for the people that are fed through a tube. 

Another option that my friend and cousin told me about in advance of my upcoming surgeries is Splendid Spoon. This is a meal kit, delivery service website that provides you with smoothies and soups made from natural, nutrient-dense quality ingredients. I plan on trying Splendid Spoon to let everyone know how the service and food is. 


This post is not an advertisement for either of these brands. It is only an endorsement for all of us in this community to eat well during times when nutrients and eating whole foods ought to be a high priority: while we are healing from surgery. 

What are ways that you have used to fuel your body after surgery or in your day-to-day life with a feeding tube or liquid diet? Recipes are very welcome. Please leave your responses in the comments, so I can follow up on them in a future blog post. 

Sunday, August 12, 2018

Thank You Brooklyn for Raising Over $17,000 for CCA!


Thank you to Angela, Brent, and "WonderKid" Brooklyn Wojtyniak for hosting their first golf tournament at Fox Creek Golf Course in Livonia, Michigan on August 5th. The Wojtyniak's raised $17,054. Two hundred people participated during the day-long event which included 18 holes of golf, prizes for the longest drives and other acts of excellence on the course. The Wojtyniaks would like to thank John MacFarland of MacFarland and Company Home Sales for their generous donation of many prizes for the golf competition. Each hole was sponsored by a company or individual yielding a $100 donation per hole. CCA and the Wojtyniaks are very grateful for those that played golf, sponsored hole signs, and contributed raffle items. 

After the action on the course, everyone gathered for lunch and raffle prizes at the Fox Creek clubhouse. While lunch was delicious, it was the raffle items that drew the most interest by all those in attendance. Angela, Brooklyn's Mom, said, "We had a raffle (approximately 60 raffle items) and a silent auction (25 items) including a Shinola watch, Star Wars Millennium Falcon LEGO set, VIP wine tour at Chateau Chantal Winery in Traverse City, MI just to name a few."

Deb Mato commented on the actives and flow of the day by saying, "We all had a great time with such kind and caring people. The golf, silent auctions, raffle prizes, and delicious food made it a great event! We were happy to support such a worthwhile cause. The supportive “Brooklyn family” is always growing in kindness and love."

The Newton family who participated in the tournament had some kind words for Brooklyn and the Wojtyniak. This bit of feedback truly warms the heart, showing us how Brooklyn was truly at the center of the planning, programming, and spirit of the event. The Newtons say, "It was a B kind-of day; everyone chose kindness. And because of B, we choose kind everyday; for that choice makes us better people. So does loving her. She lives through others like others live through her. Lucky are we to be in her wake, to see Ang’s imagination and Brent’s determination make her into the B she is today, and the one she’ll continue to grow into every tomorrow. August 5th, 2018 was another reminder of how beautiful life can be through the eyes of a child full of wonder."

Thank you again, Brooklyn for spreading love in the best possible ways: to help others in need! Congrats on your successful event. We hope you continue to contribute to CCA with the help of your generous family and friends. 





Thursday, August 9, 2018

Adult Spotlight: Tyler Nienas




“Is Tyler okay?" my teacher asked. "He looks like he got punched.”

Those words from my fourth-grade teacher to my Mom changed my life forever. It was because of her concern that my mother scheduled a doctor’s appointment which led to a diagnosis of Fibrosis Dysplasia on the left side of my face. At ten years old I didn’t really care or know of the impact this diagnosis would have on my life. 

There have been the obvious downs of living with a rare craniofacial disease. The teasing throughout
middle school was brutal. I would constantly be asked, "what happened to my face?" "Why is your face so puffy?" I would be called ugly, deformed, gross, and burn victim just to name a few choice words. While these actions and words carved a huge blow to my self-esteem, I thought there would be some solace in my first surgery, which I had right as I was starting high school. I thought finally my face will be “normal” now. It was December 20, 2006. The surgery was performed in St. Louis. I was fourteen. I remember waking up in tremendous pain and disorientation. I have had over a dozen surgeries since then, some in St. Louis others in Dallas, TX. All these surgeries were related to my Fibrosis Dysplasia.

There have been nights where I have cried myself to sleep because I felt ugly and isolated, like no one else could understand what I've been going through. I became shut off from the world. And to be honest, I have been there and I have hit rock bottom more than once.

However, you cannot let your disease define who you are. Adversity does not define you. You define your direction and purpose in life. I had great support from my friends, therapists and most importantly my family that helped me cope with the struggles of Fibrosis Dysplasia. There are more people in your corner than you realize. It took me a long time to accept my disease and come to grips with it. I became a better person because of it

Now, I am a 26-year-old man living and working in St. Louis, Missouri. I can truly say I am blessed to have this happen to me. It has given a new vigor to my life. It has made me appreciative of what I have. It has taught me that life is meant to be lived. Beauty is skin deep. It is the impact of your actions and how you treat others, no matter their physical appearance, that will ultimately be what people remember about you. It is that attitude and mindset that has made me able to share my story with others. I encourage all of you to share your struggles, your pain, but most importantly your victories because those happen daily. The victories happen when you choose to live your life and look beyond the realm of physical appearance, and into the world of supernatural courage and determination. 

If you are living with a craniofacial disease, whether you are a parent or patient, know that I and everyone here at the CCA is in your corner and rooting for you always!

Tuesday, August 7, 2018

Help Celebrate Craniofacial Awareness Month, Kickoff Dallas Sat., Sept. 8th



Dallas, TX -- Children's Craniofacial Association celebrates its 14th annual Craniofacial Acceptance Month this year and you can be part of the fun. CCA will host a Dallas-area picnic on September 8th. We encourage our families to host awareness events in their home cities spanning across the United States during the month of September. CCA hopes that you will share your stories and spread the word about our courageous kids through your local newspaper, TV, and radio stations.

Many kids with facial differences, empowered by the movie and New York Times-bestselling book, Wonder, eagerly want to share their “real Wonder” stories with the world. You can help them reach the goal by giving them access to your media platform. If your newspaper, television or radio station covered one of our CCA kids’ stories during the premiere of the movie “Wonder” or for last year’s Craniofacial Awareness Month, please consider following up with the family. Here is a list of links to stories that received news coverage last year https://ccakids.org/real-wonder-stories/

The Dallas-area picnic is our kickoff event signaling the beginning of the month-long celebration of
everyone in the craniofacial community. Sandy Lake Amusement park in Carrollton, TX will host the
picnic on Saturday, September 8th from 11AM - 1PM. This year a barbeque lunch will be provided. The event will feature games, a D.J., free amusement rides, and time for families to connect and meet children with craniofacial conditions.

Dallas CAM Picnic 2017
Children’s Craniofacial Association (CCA Kids), a national nonprofit headquartered in Dallas and founded in 1989, worked for over 27 years toward the vision of a world where all people are accepted for who they are, not how they look.

Each year approximately 50,000 children in the United States are born with or develop some form of
facial difference (previously called disfigurements). In many cases, reconstructive surgeons can correct these problems early—often while the children are still infants. In other cases, however, reconstruction is not so easy or even possible. To assist these families, CCA offers programs and services including Patient Financial Assistance, the Annual Family Retreat & Educational Symposium, and kindness education and bullying prevention programs in middle schools across the country.

Children's Craniofacial Association, a 501(c)(3) nonprofit organization based in Dallas, Texas and founded in 1989, serves over 20,000 families per year and an additional 10,000 unaffected students in schools across the country. CCA's mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look. Learn more about at http://www.ccakids.org.


Wednesday, August 1, 2018

From the Bench with Francis: An Interview with Peter Mossey


  

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


Dr. Francis Smith travels all of the world to conduct research on genetics and craniofacial conditions. He speaks to other scholars about his research interests. In this video, Dr. Peter Mossey, Professor of Craniofacial Development and Associate Dean for Internationalization at the University of Dundee in Scotland talks to Francis about his research. Learn more about Professor Mossey here at his website.



Thursday, July 26, 2018

Dallas West Village Family Night Out Features Family Fun





By Kara Jackman and Erica Mossholder

Araceli Kimberlin and Steven Weiss with their families will spearhead CCA’s Family Night Out in the West Village on August 16th from 5pm to 9pm. Araceli, CCA Mom, will host families on the patio of Village Burger Bar located at West Village. There will be complimentary appetizers and a kid-friendly craft activity. Araceli will facilitate conversations about CCA and craniofacial conditions. Steven will speak about his life and involvement with CCA at 6:30pm in the Kendra Scott store.


Araceli was born with Crouzon’s and now has two sons, one, Aaron, with Crouzon Syndrome, too. Her unique perspective on craniofacial conditions as both a former patient and now a parent is unique. She says, “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.”

Further, she feels strongly about CCA and the community we provide, “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.”

Steven, too, felt strongly about advocating on behalf of those born with facial differences. He is a member of the CCA Board of Directors, which allows him to use his leadership and business skills to increase CCA’s reach to help more families. Steven was born with Crouzon syndrome, too. He shares his story about meeting his wife, Petty, and starting their family, with twins Blake and Claire, giving hope to young adults with facial differences that are looking to start healthy relationships and families.  
At each location, the stores will be donating a portion of the evenings proceeds to CCA. It’s the perfect time to shop and eat for a good cause. At Kendra Scott, we’ll be doing a raffle for everyone that makes a purchase to win a lovely gift basket and you don’t have to be present to win! The store is also accepting call-in orders, so no matter where you are in the country, you can participate. As long as the item is in stock, it will ship FREE to you!
We hope you’ll join us for this Family Night Out, to mix and mingle with CCA family and friends and to help raise much needed funds for CCA in the process.
If you do not live in Dallas you can still take part in the fun and raise money for CCA at the same time. Just follow these directions to shop Kendra Scott on Thursday, August 16, 2018.



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.