Sunday, August 20, 2017

We Are A Community



By Rasheera Dopson 
Rasheera Dopson lives in Atlanta, GA. Her mission is to empower young men and women in the areas of self-esteem and confidence. She hopes that in sharing her story she can spread the message of overcoming adversity. In her spare time she enjoys blogging, watching 90s sitcoms, and volunteering in her local community. She recently earned a scholarship from NBCUniversal to study communications. She will begin classes at Syracuse University soon. 





Over the past few weeks, I have had a lot of time to think about my experience at the Children’s Craniofacial Association Retreat and Symposium and to say that I’m at a loss for words is an understatement. However, I will do my best to express the impact this organization has had on my life and the craniofacial community as a whole.

First, let me say that being a part of any community is one of the most formative experiences with other people that we may have beyond the family unit. I consider myself extremely blessed to be a part of something much larger than myself. You see, I love using the word community when referencing people with craniofacial conditions, because it sends a consistent message to myself and the world at large that “despite our facial differences we are strong and we are proud" because we have one another.

We all know the famous saying “United we stand, divided we fall.” I feel those exact same sentiments when speaking about the craniofacial community. We are stronger as one.  I express myself so passionately because I am sure I speak for all people affected by craniofacial differences, across the globe, that the words “pride” and “community” have not always been in our vocabulary.  Instead, most of us know well the burden of feeling alone, isolated, and not included.


Nevertheless, there is something powerful when you realize you are not alone. For me, this epiphany came to me at the CCA Annual Retreat and Symposium. I am sure many of you reading this have also found that moment coming into the CCA community -- that sense of safety and support—knowing that you have people who share in your struggles and strengths standing next to you and behind you fighting the greater fight.

This is what I felt at the CCA Annual Retreat. I felt connected and I felt proud. I remember leaving the retreat and walking through the airport so unapologetic, so confident and assured of where I belong. I trusted I was part of a group of people I was proud to represent.  That day walking into the airport I did not do my best to try to hide or ignore the stares, but rather I stuck my chest out because I wanted to be seen. I wanted the world to not only see my face. I wanted the world to know that my face was one out of hundreds of thousands of the different faces with which I was just in community. And boy is our community strong. Even though no single person at the retreat was related to me by blood, somehow we are all connected through our shared life experiences filled with doctors and bullying.

The craniofacial community, though we might be small, is changing the way the world relates to and stigmatizes differences.  I am honored to be a part of a community that displays kindness and warmth, passion, and compassion. A place were a different person can feel loved and accepted. I look forward to sharing the knowledge of my community to all whom will listen because I truly believe our differences can change the world!  

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?