#ThankfulThursday: #CCARetreat2022 Gold Level Sponsors

CCA's Annual Family Retreat and Educational Symposium is happening live and in person again this year. We will all descend on Dallas Texas' Sheraton Dallas on Olive Street after two years of virtual retreats. The retreats provides a fine opportunity to meet others in the craniofacial community that face the same challenges. There will be events, educational sessions, and loads of fun to be had by all. 

 The retreat is not possible without the help of our sponsors. This week we would like to thank our gold level sponsors. International Craniofacial Institute and MED-EL generously donated to make this Annual Family Retreat and Educational Symposium a reality. 

#ThankfulThursday: We Are Grateful For Our Nonprofit Level, ConnectMed and FACES

 

CCA's Annual Family Retreat and Educational Symposium is happening live and in person again this year. We will all descend on Dallas Texas' Sheraton Dallas on Olive Street after two years of virtual retreats. The retreats provides a fine opportunity to meet others in the craniofacial community that face the same challenges. There will be events, educational sessions, and loads of fun to be had by all. 

The retreat is not possible without the help of our sponsors. This week we would like to thank our nonprofit sponsors. ConnectMed and FACES generously donated to make this Annual Family Retreat and Educational Symposium a reality. 

Get Your Virtual Retreat T-Shirt **Link To Purchase Inside**

Pre-Order your Virtual Retreat T-Shirt

Available through June 5th

We are still prepping our First Ever Virtual Retreat registration link & schedule. We will share with you all soon. We plan to invite our whole community. 

In anticipation, we're also pre-selling a T-Shirt to benefit CCA. Sales end in 3 weeks and shirts will ship directly to you the week after orders end, so you'll have it in time for the Virtual Retreat!

https://www.fundraisertees.store/cca-first-annual-virtual-retreat-2020/ 

Please also share this email with your friends and family! 

We need your support! Anyone can order, all are welcome!

Time of Our Lives: The Andersons Find their Tribe at St. Louis Retreat

Six years ago, when Nathan was three and Owen was seven, Owen saw a video of an older brother that wanted to help his younger brother who was paralyzed. This older brother held a 5K for his younger brother, so Owen decided that he wanted to do his own fundraiser. We had heard of CCA through Facebook, but we had never really looked into it until that point. Once Owen's fundraiser was rolling, it became something bigger than we imagined, and we ended up, that year, at our first retreat in St. Louis in 2013. 

As soon as we walked into the hotel and felt the presence of so many families just like us, this calm and sense of belonging washed over us. I found myself just staring at everyone, which I know is such a "no-no" in our community. But I just couldn't stop, because I was beside myself with awe and excitement of what we were about to be involved in. Before the retreat officially began, we found ourselves at the Hard Rock Cafe, and there were several families there who we had not officially met yet. 3-year old, Nathan, saw a young man with a BAHA. He pointed from across the restaurant and declared, "Look at that boy! He has a BAHA like me!" At 3-years old that was the first time that he had made a connection like that, and the excitement and friendships that he made that weekend with a small group of boys kept him going the entire weekend. Thanks to Owen and his desire to help, he encouraged us to become involved in something so much bigger than our family and small social 
circle.

As each June approaches, our family has something to look forward to as Retreat comes closer. Every year Nathan and Owen continue to make connections, knowing that they is one of such an awesome and amazing group of people. CCA gives Nathan, Owen as a sibling, and David and I as parents somewhere to plug into each year. The retreat re-energizes all of us to prepare for the challenges and blessings of the year ahead. 

Time of Our Lives: Memory of A First Retreat

CCA celebrates its 30th birthday on February 24th. Each member of this ever-growing family has a story to tell. Some have been documented in the 30 Stories, 30 Faces, 30 Years campaign. Others, we will share through the series we call "The Time of Our Lives."

CCA has a unique way of touching our hearts. In an effort to include even more voices of the people that this organization touches, we hope you take a moment out of your day to read how we have had the "Time of Our Lives" over the last 30 years together.

Our first entry is from Deena Dyson and her daughter's first Annual Family Retreat experience. Take a moment and enjoy!

"Before we took our daughter, Teresa (now 12) to her first retreat at age 5, we didn’t yet know how aware she was or wasn’t about her different appearance. We got an answer quickly when we all met Meg Storie. While being introduced, Teresa beamed. With a huge smile and while pointing at Meg, she exclaimed, “You have my face!” CCA has had our hearts ever since." Deena Dyson, Mother of Teresa

MORE Reflections on 28th Annual Retreat in Salt Lake City

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

By Erin Williams Richmond 

I am home and now that I have hugged my boys and reflected on the weekend, I am going to try my best to find the words to describe yet another amazing, memorable weekend at the Children’s Craniofacial Association annual retreat. CCA has been a part of my life since I was 3 years old. In 1985, Cher starred in the movie Mask, a film about the life of a boy who had a rare craniofacial condition. My very first experience was a meet and great with Cher at her Heart of Stone Tour in 1989, followed very soon after by an event in Washington DC to promote awareness of craniofacial disorders and advocacy for much needed insurance coverages. It was at that time when several families who spent time with Cher realized as they connected and created lifelong friendships how very important it was to make those connections for the well-being of both parents and children. The first CCA retreat was born 28 years ago from a very private and emotional discussion in Cher’s hotel room about how great it was to finally be in a place together where our families felt safe and understood. My family was part of that conversation and just a short time later we participated in the very first retreat in Orlando, Florida. Char and Jill along with others have been an important part of my life ever since. We were not able to attend every retreat but when we did I always loved being with my old friends and making new ones. It's remarkable, and actually surreal to be able to witness (although really too young to actually remember haha) a small group of families come together with an idea and to see how over the years this amazing organization has grown to exceed the capacity of some pretty huge hotels. It's incredible. It's hard to put into words. On Saturday, I took a step back to soak up the moment and it brought me to tears. 

I have found my safe haven. My home with those that I love and who love me unconditionally is my safe haven. Beyond the walls of my house, I am faced with many obstacles and uncomfortable situations daily but thankfully I am strong enough to overlook and overcome them. My other safe haven is with my CCA family. Once year, I am blessed to be surrounded by children and adults with craniofacial differences and their families. Living with Treacher Collins isn’t easy but it’s an amazing life that I live and wouldn’t trade it for anything. To flourish, we all need a safe place, both physically and emotionally, to come home to. For many of us, the annual CCA retreat is our safe place to come home to. It’s our sanctuary. We are surrounded by others who “get it.” It’s four days where we aren’t stared at. You walk into a large room and you don’t get that high school anxiety about who to sit with and if someone will like you. We don’t get asked questions about how we look. We aren’t judged. No one presumes incompetence or lack of intelligence because of how we look. We are confident. We talk to strangers, we dance, we sing, we crack jokes. We feel empowered. We lift each other up. It’s a place where inner beauty, personality, intelligence, talent, sense of humor is valued and cherished above all else. Someone tells you that you look beautiful and it feels genuine. You feel loved. You feel like you’ve known these individuals for a lifetime. You become family with someone you met for the first time yesterday. Lifelong friendships are formed and they flourish year after year. Tears are shed … happy tears and tears of sadness or fear. The smiles and laughter spreads faster than wildfire and our cheeks hurt for weeks. For us, kindness isn’t a choice we make … it’s an inherent part of who we are. I come home immersed in the superficiality of the world around me yet I have such hopes and dreams for a better, kinder place. The families that I have been with for the last four days, some of which I’ve known for 28 years, are the most beautiful, kind, talented, courageous, intelligent people I have ever had the pleasure of knowing. While life has gotten busy over the years, the lifelong friends and support system from CCA have never faltered. I consider myself incredibly lucky to be a part of the CCA family. “Courage. Kindness. Friendship. Character. These are the qualities that define us as human beings, and propel us, on occasion, to greatness.” I am blessed to be a part of this one big happy CCA family, to have the CCA retreat as my safe haven, and to know such great, wonderous people! 

Thank you Erica Crabtree Mossholderr, Annie Burt Reeves, Charlene Char Duitsman Smith, Jill Gorecki Patterson, Kara Jackman and so many others for making this retreat a memorable, safe haven for us year after year. You are appreciated and loved beyond measure. 

<3

#ThankfulThursday: An Annual Retreat Attendees Reflect on Their Experience

By Sabrina Robineau

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

There was no social media when she was growing up. There was no way to easily search "craniofacial syndrome" on Google. There were no online networks to join for support. This girl felt completely alone, not knowing there were others out there who were born just like her. Others who had the same physical traits as her and who had the same surgeries that she'd gone through. 

Flash forward 20 years later... that girl is now surrounded by hundreds of kids and adults who were also born with a craniofacial syndrome. Her world has been opened up and it is all thanks to CCA - Children's Craniofacial Association. 

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

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

CCA also gave me something else that I always dreamed of but didn't believe was possible, which is... true love. If it wasn't for CCA, I never would have found the love of my life, my fiancé Freddie, who I can’t wait to marry and start our life together. 

The CCA retreats have helped me to accept myself for what I look like on the outside. It helped me to embrace my unique traits and love myself. The outside world can be tough and challenging. I still face judgments from the public. I still have my moments of doubt, and bad days where I feel like hiding.
That's why attending the CCA retreat every year is so important to me. I get to step back into the safe world for a few days and feel so much love and acceptance. 

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

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

May 31st Deadlines for Annual Retreat and Educational Symposium

REMINDER: Please make sure you send Annie Reeves ([email protected]) the following information by May 31st. 

1. The symposium sessions you and your family members will be attending. (If you will be using childcare, please email your completed form directly to the company, not me, by May 31st.)

2. If you will be needing a Veggie Burger instead of a Hot Dog during Saturday's provided lunch, please email me.

3. If you or anyone from your family won't be eating one of the provided meals, I need to know so I can remove you from my head count.

Thank you all for being so awesome! See you next month!

2018 Annual Retreat Deadlines & Retreat Program Schedule

Check your mailboxes for these upcoming, important Retreat Deadlines and itinerary sent to us by our intrepid program director, Annie Reeves. Contact her ([email protected]) with any questions you may have about this information. 

Thank you for all that you do, Annie.

IMPORTANT DEADLINES:

May 20th: Deadline to email me a picture for our retreat program. This can be a family picture, picture of your child/children or an individual picture. 

May 30^h: Last day to book your room at CCA’s discounted rate. Here is the online booking link and our discounted rate is $139 per night, plus tax. https://reservations.travelclick.com/4650?groupID=1695394

May 31st: Deadline to sign up for child care during the Educational Symposium and the Symposium sessions you and your family will be attending. (Will send information for both ASAP)

June 5th: Deadline to let me know which meals you and your family will NOT be eating. 

Daily Retreat Program Schedule

THURSDAY:

Registration: At this time you will check-in with the CCA Staff and Volunteers so we know you have arrived. You will be given a retreat bag full of goodies such as a retreat t-shirts, name tags and more!

Retreat Kick-Off: We will kick-off the retreat with some announcements and introductions. Tacos and Entertainment will be provided for the families.

FRIDAY: 

Breakfast will be provided

Group Meet-ups: During this time, you will have the opportunity to meet other families who have children with your child’s craniofacial syndrome or condition and families who have children within your child’s age group.

Lunch is on your own

Talent Show: Brought back by popular demand! Everyone loved last year’s Talent Show, so we are doing it again this year! If you plan on performing in the Talent Show, please email me the name of the performer and what talent they will be providing. Each performer will have about 2-3 minutes for their performance. Once all slots are filled, I will be sending you an email to gather additional information from you and assign you a time for your performance.

Family Night/Dinner Provided: Every year at the retreat we do a basket raffle during Family Night (which takes place on Friday night) and the families love it, so we are going to keep it around. For those of you who have never been to a retreat, let me explain how this works. We ask our retreat families to bring an item or basket with items which represents your hometown, city or state. Then we number each basket and set a brown paper bag in front of each item. We sell raffle tickets and you simply place your ticket in the bag of the basket you would like to win. Once everyone has purchased their tickets, we hold a drawing for each basket. It's really neat to see what everyone brings each year. Please don't feel like you have to bring something, this is just totally up to you. And last, but not least, if you are bringing an item or basket for our raffle please bring this to registration on Thursday. Registration will be taking place from 11:00am-3:00pm. (If you have any address labels, you might want to bring them with you. It saves you from having to write your name on the tickets. Ticket prices are 20 for $5) Entertainment will be provided.

Teen Night (Ages 13-19): If your teen will be attending Teen Night on Friday, they will be eating dinner with everyone else in the Grand Ballroom. When it is time for Teen Night, will have a place for them and the chaperones to line up outside of the ballroom and then we will walk everyone to the Pool. I am looking for 3-4 Adults to chaperone teen night. If you are interested, please email me.

CCA Adults’ Casino Night (Ages 20 and up): If you are a CCA Adult with a craniofacial condition and will be attending the Casino Night, you will be eating dinner in the Grand Ballroom. You will head to Casino Night at 8:00pm which will be located in the Olympus room.

SATURDAY:

Breakfast is on your own

Zumba: Our very own CCA Dad, Jerry Carchi, will be teaching a fun Zumba class for the entire family!

Group Photo: Each year we do a big group photo. We ask that you please wear your CCA Retreat T-shirt which will be provided in your retreat bag during Registration on Thursday, June 28^th.

Pool Party/Boxed Lunches Provided: Everyone will head to the pool for an afternoon of fun. Boxed lunches will only be provided from 11:00am-1:00pm.

Dinner/Dance with DJ and Dinner Provided: Most of our families do dress up for this event, although not required. The attire isn’t formal, more like slacks, summer dresses, etc…

SUNDAY

BREAKFAST PROVIDED: We will give our hugs, say our goodbyes, exchange numbers and start the countdown to the 2019 retreat!

2018 Annual Retreat Deadlines and Itinerary

IMPORTANT DEADLINES

May 20th: Deadline to email me a picture for our retreat program. This can be a family picture, picture of your child/children or an individual picture. 

May 30th : Last day to book your room at CCA’s discounted rate. Here is the online booking link and our discounted rate is $139 per night, plus tax. https://reservations.travelclick.com/4650?groupID=1695394

May 31st: Deadline to sign up for child care during the Educational Symposium and the Symposium sessions you and your family will be attending. (Will send information for both ASAP)

June 5th: Deadline to let me know which meals you and your family will NOT be eating. (Will send out menus ASAP so you can see what we will be having for each meal.)

Annual Retreat Itinerary 

THURSDAY 

Registration: At this time you will check-in with the CCA Staff and Volunteers so we know you have arrived. You will be given a retreat bag full of goodies such as a retreat t-shirts, name tags and more!

Retreat Kick-Off: We will kick-off the retreat with some announcements and introductions. Tacos and Entertainment will be provided for the families.

FRIDAY

Breakfast will be provided

Group Meet-ups: During this time, you will have the opportunity to meet other families who have children with your child’s craniofacial syndrome or condition and families who have children within your child’s age group.

Lunch is on your own

Talent Show: Brought back by popular demand! Everyone loved last year’s Talent Show, so we are doing it again this year! If you plan on performing in the Talent Show, please email me the name of the performer and what talent they will be providing. Each performer will have about 2-3 minutes for their performance. Once all slots are filled, I will be sending you an email to gather additional information from you and assign you a time for your performance.

Family Night/Dinner Provided: Every year at the retreat we do a basket raffle during Family Night (which takes place on Friday night) and the families love it, so we are going to keep it around. For those of you who have never been to a retreat, let me explain how this works. We ask our retreat families to bring an item or basket with items which represents your hometown, city or state. Then we number each basket and set a brown paper bag in front of each item. We sell raffle tickets and you simply place your ticket in the bag of the basket you would like to win. Once everyone has purchased their tickets, we hold a drawing for each basket. It's really neat to see what everyone brings each year. Please don't feel like you have to bring something, this is just totally up to you. And last, but not least, if you are bringing an item or basket for our raffle please bring this to registration on Thursday. Registration will be taking place from 11:00am-3:00pm. (If you have any address labels, you might want to bring them with you. It saves you from having to write your name on the tickets. Ticket prices are 20 for $5) Entertainment will be provided.

Teen Night (Ages 13-19): If your teen will be attending Teen Night on Friday, they will be eating dinner with everyone else in the Grand Ballroom. When it is time for Teen Night, will have a place for them and the chaperones to line up outside of the ballroom and then we will walk everyone to the Pool. I am looking for 3-4 Adults to chaperone teen night. If you are interested, please email me.

CCA Adults’ Casino Night (Ages 20 and up): If you are a CCA Adult with a craniofacial condition and will be attending the Casino Night, you will be eating dinner in the Grand Ballroom. You will head to Casino Night at 8:00pm which will be located in the Olympus room.

SATURDAY

Breakfast is on your own

Zumba: Our very own CCA Dad, Jerry Carchi, will be teaching a fun Zumba class for the entire family!

Group Photo: Each year we do a big group photo. We ask that you please wear your CCA Retreat T-shirt which will be provided in your retreat bag during Registration on Thursday, June 28^th.

Pool Party/Boxed Lunches Provided: Everyone will head to the pool for an afternoon of fun. Boxed lunches will only be provided from 11:00am-1:00pm.

Dinner/Dance with DJ and Dinner Provided: Most of our families do dress up for this event, although not required. The attire isn’t formal, more like slacks, summer dresses, etc…

SUNDAY

BREAKFAST PROVIDED: We will give our hugs, say our goodbyes, exchange numbers and start the countdown to the 2019 retreat!

#ThankfulThursday: Sell 10 Car Raffle Tickets, Win A Chance to Have Your CCA Retreat Costs Covered

You have probably heard about our Car Raffle by now! Well, we want to extend a special opportunity for our CCA Families ... if you help us out and sell 10 (or more) Raffle tickets*, you will be entered in a drawing for a Room Scholarship at the CCA Retreat 2018! 

That's right - one lucky family who sells 10 (or more) tickets will win a room scholarship, also drawn in October 2017!

You can see a video of the 2017 Retreat here:

CCA Crash Edit from ThreeFold Films on Vimeo.

It's very easy - just share this email and tell your friends, neighbors and family. Have them order online (*and put your family name in the "Tracking Code" box) or call the office and mention your family name. If you'd like to walk around your neighborhood selling tickets, let us know and we can send you order forms. 

I'm asking you to share this opportunity with your friends! We're selling only 500 more tickets (1,000 total) and the winner will get to pick a Jeep Wrangler, Dodge Ram, or Chrysler Pacifica, valued at up to $50,000, at a dealership nearby and drive off in a brand new vehicle!

You can buy a single ticket for $100 or 3 tickets for $250.Please tell everyone you know. Forward this message to your contacts and share it on social media. We need to sell out ASAP!

Good luck!

#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! 

#WonderWednesday: Casting Call for 'Wonder Song' & Music Video at Retreat

We are getting all geared up for retreat. Here is an exciting opportunity for kids to be part of a music video. 

We have some exciting news to share with you! Longtime CCA Retreat attendee and performing artists, Bianca Moon, has teamed up with Director Edward Edwards and Ed O’Neill (Modern Family, Finding Dory) to record an incredible song, aptly titled "The Wonder Song." This song is inspired not only by the book and film, but more importantly it is a love song to CCA Kids!

Bianca will be performing this song during the Dinner/Dance on Saturday, July 1^st, and we need your help! We are looking for Retreat Attendees to be participants to sing and perform this song with Bianca! If you are interested, you will be sent the lyrics and a recording of the song. You will be responsible for learning the song prior to the retreat. You will also be required to attend a performance rehearsal during Retreat. The exact time may vary depending on the number of participants, but the block is planned for 11:00am-4:00pm on Friday, June 30^th. (Note: This rehearsal is during the Water Mine Park off-site activity and you must be attending the 27th Annual Family Retreat & Educational Symposium.)

Please contact us if you want to participate, sign up for Retreat, or have any questions at all. This is a fun and unique opportunity for our kids and sibs who enjoy music, singing, and performing! 

Retreat Sponsors Needed!

Click here to learn more about the retreat and how you can help make this year's retreat a memorable one.