Tuesday, August 30, 2016

Links of Love Golf Tournament is 1 Week Away!

Friday, September 9, 2016

11:00 AM - 6:00 PM 

Registration at 11:30AM, Shotgun start 1:00PM

Join us for the 9th Annual Links of Love Golf Tournament in Dallas, Texas!

Each year we hold a golf tournament for area players to come together and have fun and benefit CCA at the same time.
We enourage you to sign up now and secure your spot in the tournament. You can also sign up to sponsor the event at any of our levels!
This year, we will be playing at Firewheel Golf Park in nearby Garland, Texas.
Registration opens at 11:30am at the open-air Pavilion, where you can browse the silent auction, have a cup of Starbucks coffee, grab a boxed lunch, and get in a few practice swings with unlimited driving range balls.
Shotgun Start will be at 1pm. Enjoy complimentary drinks on the course and after the competition, enjoy a BBQ buffet dinner while we hand out awards and prizes, and announce the silent auction winners. Silent Auction catalog coming soon!

We have a big goal this year, because we're preparing for 2017 to be the largest CCA Retreat to date. We want to bring 150 families together in June 2017 and we can't do it without a record-breaking year. Please invite your friends and coworkers and together, we'll give hope to a lot of deserving CCA Kids!

Ask the Doctor: Options for Teen's Forehead

CCA posts a monthly blog series called, "Ask the Doctor." You can submit your questions to Annie Reeves ([email protected]) and we will ask Dr. Earl Gage of Kids' Plastic Surgery in St. Louis to answer them. Thanks Dr. Gage for helping spread information and resources for our cranio families!

Ask the Doctor

Earl Gage, MD, Kids Plastic Surgery, MercyChildren’s Hospital
Ask The Doctor
Earl Gage, MD
Kids Plastic Surgery, Mercy Children’s Hospital – St Louis, MO

Question: My daughter had bicoronal craniosynostosis (no known syndromes) corrected at 3 mos of age. She has no protruding brow bone over the eye, and where her eyebrows lie is very tight almost like a band is constructing that part of her forehead. Her surgeons from UC Davis have moved out of state, so we have not had follow up in many years. She is currently 15. Is there anything we can do to normalize this area of her face? The concern is primarily cosmetic, although her eyes are at risk without the normal brow bone protection. Is dermal filler an option? What kind of doctor should we see?

Answer:  The problem that you describe sounds like the orbital rim and forehead sit too far back. This can be a result of inadequate advancement at the time of the original surgery. It can just as easily be the result of regression or relapse following a well-done procedure, especially if the soft tissue was tight following an aggressive advancement.

Most of the time, when the brow and forehead sit too far back and the eyes are exposed, surgical correction by re-advancement of the forehead and brow are needed to normalize appearance and protect the eyes. Most of the time, this can be accomplished by doing a similar surgery to the one she had in infancy. The tightness of the skin may pose some challenges in moving the forehead forward, but this is usually manageable.

There are other options that can camouflage problems with forehead shape and position, such as prosthetic custom implants, dermal fillers or fat grafting. With custom implants, however, you need to have soft, healthy soft tissue in the area in order to minimize risk of implant complications or implant exposure. When the skin is scarred and tight, the risk in placing an implant may be too high. With dermal fillers and fat grafting, you should not expect to have dramatic changes. These modalities are really best when trying to smooth or improve small contour irregularities.

I cannot give you a specific recommendation for your daughter since I have not seen her and do not have a clear picture of her forehead position or the soft tissue challenges that may be present. However, based on your description, it sounds like surgery may be required to get the improvement she wants. You should see a craniofacial plastic surgeon in your area to get an in-person assessment and come up with a personalized plan for your daughter.

Monday, August 29, 2016

Let's Turn Facebook Yellow for #CAM by Joe Brooks

Joe Brooks knows that a picture is worth a thousand words. In this post from last year, he shows us how to turn Facebook yellow to celebrate Craniofacial Awareness Month (#CAM). Thank you, Joe for your great instructions on how to update your Facebook page images. Everyone should do the same on Twitter and Instagram, too. On Twitter, be sure to tag your #CAM posts with this year's hashtag, #DifferentIsCool_CAM2016. Every word and image make a big difference. 

September is Craniofacial Acceptance Month. During that month, I, along with my friends, aim to raise awareness and let the general public know that people with craniofacial syndromes are, well…people. Just like them. We all have likes and dislikes and we can be goofy and all that good stuff. Children’s Craniofacial Association is a nonprofit headquartered in Dallas that serves people and families affected by craniofacial differences. 

Every September, we encourage as many people as possible to change their Facebook profile pictures and/or cover photos to the CAM graphics. Since I know that there are people that want to do this but don’t know how to use Facebook very well, or are not sure how to change their pictures, I have decided to write up some instructions to explain how it’s done. Feel free to pass it on to anyone who needs help.

Part 1 (If you already used a picture before, you can skip to part 2 and 3)

For Profile picture, you will want to put your mouse over your current profile picture, then a bar comes up in the square that says: “Update Profile Picture.”

Click that and a menu will pop up. Find the “Upload Photo” option at the top, and then upload it from your computer. You can download the CAM graphic from this blog post below. If that doesn’t work, download from the CCA website, or from one of your Facebook friends who already has it.

How to download and save: Just right click the image and “save image as” to save to your computer; it will most likely save to your "Downloads" folder on your computer, unless you select another folder (like your Desktop).

Part 2 
If you already made the Children's Craniofacial Association logo your profile pic in the past, you do NOT need to re-upload it. All you need to do is select “Choose from Photos” from that same menu that pops up when you hover over your current profile picture. Then, you have the option to scroll through your photos.

Find that yellow graphic that you used before. Facebook will ask you if you want to re-use that picture….lol….just click "YES" and there you go!

Part 3 - For cover photos the process is similar.
There is a faint camera icon on the top left corner of your current cover photo. Click on it and a similar menu will appear, follow the same profile picture steps for your cover photo.

So there you have it. Now you too can help spread the Acceptance message with us all month.
And don't forget to apply this year's new hashtag #DifferentIsCool_CAM2016 to your social media posts.

Saturday, August 27, 2016

Official Retreat Video is here!

Children's Craniofacial Association wants to express our joy and appreciation to Trip Owens of Threefold Films. Trip specializes in cinematography and post production work for weddings and corporate clients in and around Birmingham, AL. As a volunteer, he created the official Retreat video for the #CCARetreat2016 this year. 

About Trip Owens
Trip Owens is the owner of Threefold Films in Birmingham AL. The company films weddings, corporate and non-profit films. Trip loves telling stories through video and capturing a series of moments that move people. So when he met Erica and heard the heart and vision of CCA, he knew he had to do whatever was necessary to be a part of it. He’s a huge fan of t-shirts, miniature dachshunds, and most of all his wife, Faith.

Here's what Trip had to say about his experience volunteering at Retreat:
I was almost instantly smitten with this organization and these kids. One major takeaway I had was this: Appearance doesn’t affect character, but character definitely affects appearance. And this was a group of some of the best looking people I’ve ever seen! It was a privilege to capture these families in action and I can’t wait for the next opportunity! 

Check out the video here and on social media!

Thank you, Trip, for volunteering to capture the memories of the "Time of our Lives" for everyone to share. 
You captured some very special and beautiful memories for CCA and our families and we are grateful!

Wednesday, August 17, 2016

Dallas Fundraising Alert: Links of Love, September 9th At Firewheel Golf Park

Do you like to golf? Do you live near the Firewheel Golf Park in nearby Garland, Texas? Then grab your putter and pitching wedge, hope in your cart, and drive come out for a day full of fun to help support Children's Craniofacial Association. Monies donated will be used for help our families attend our Annual Retreat. For more information about the event click on over to this page. 

Wednesday, August 10, 2016

Beauty, Art, and Math!

The writing in this post from the United Kingdom's Changing Faces was too good to save for Craniofacial Awareness Month. In this post, Ariel Henley from the United States, talks about art, beauty, and Crouzon Syndrome. We hope this story gives new parents hope, and young adults an excellent perspective on something with which we all struggle.

Happy Reading, and thank you Changing Faces.


Monday, August 8, 2016

Retreat Photography 2016

Children's Craniofacial Association wants to express our joy and appreciation to Traci Burke of Traci Burke Photography. Traci specializes in creating stunning wedding photography and cinematography with her husband, Justin. Her work showcases the natural beauty and also high glamour of sunny, South Florida weddings and beyond. As a volunteer, she photographed our CCA Friday Pool Party and Yoga Session at the #CCARetreat2016 this year. 

About Traci Seitz (Burke)
Traci has a Bachelor of Arts with an emphasis in photography. She grew up in a small town in North Dakota and moved to Florida after college with her husband, Justin. Together, they own and operate Traci Burke Photography, a wedding photography and cinematography company. When Erica was looking for a photographer to ask to volunteer, the first person she contacted was Traci. Erica loves the way Traci captures joy and her ability to create natural-light photos that highlight the unique beauty of her subjects. When Traci agreed to photograph Retreat, everyone at CCA was thrilled and we are so happy with the results! 

Here's what Traci had to say about her experience photographing Retreat:

When Erica contacted me to photograph the Retreat, I said yes immediately! Each year, we donate our services to a great cause and was really excited to participate in such a wonderful and special event!  When I arrived, I was a little nervous, but everyone welcomed me with such open arms! I really enjoyed capturing each family and loved watching all the children having so much fun in the sun! Thanks again to Erica and everyone at the retreat for sharing the day with me!

You'll be seeing the photos she took in many of our social media and blog posts and 
here are a few to enjoy today, as well. 

Thank you, Traci, for volunteering to capture the memories of the "Time of our Lives" for everyone to share. 
You captured some very special and beautiful memories for CCA and our families and we are grateful!

Wednesday, August 3, 2016

CCA Launches ASL Webinars to Help You Learn to Sign

CCA American Sign Language Webinars

You can learn conversational sign language with your CCA friends now through CCA’s new ASL webinars. These live, weekly webinars will feature a short lesson (to supplement your personal practice and study), the introduction of new ideas, words, or phrases, and a chance to be one of the webcams attendees who practices along on video chat! The webinars will also be recorded and made available at a later date.

CCA Mom and Son duo, Rose and Frederick Seitz
Rose and Frederick live in Northeast Ohio and have been signing since Frederick was a baby.  Frederick, 24,  attends University of Akron and will graduate in May with a Bachelors in Electrical Engineering.

Read more about Rose’s Journey to ASL in this great blog post from 2015: http://www.ccakidsblog.org/2015/06/our-journey-to-asl.html

Starting September 13 at 7:00pm CT
Meeting weekly on Tuesday evenings, 7pm – 7:45pm CT
No class on Nov. 22 and the last class for 2016 will be Dec. 13.

Virtually via GoToMeeting – make sure you download and test this product on your computer or mobile device before the first webinar. http://help.citrix.com/meeting/join

ASL Webinar Series
Please join my meeting from your computer, tablet or smartphone.
First GoToMeeting? Try a test session:

  • Sign up online here.
  • Up to 26 attendees can participate in the live webinar, with the ability for up to 4 attendees to share their webcam and practice along on video.
  • Sign on information will be emailed to the group and it will be your responsibility to sign on early to get into the live session. 
  • For those who cannot attend live, the sessions will be recorded and made available in the future for free download/online use.

  • Set a calendar reminder for the weekly meeting.
  • The login info won't change, so bookmark the page.
  • Sign on early!
  • Do your homework!
Rocket Languages is an award-winning interactive online language learning system. The multi-faceted, comprehensive system allows patrons to learn conversational language at their own pace. The library-user-free program allows patrons to fully utilize Rocket Language's easy to access online lessons right from your own home! Users can continue to access their program until they determine they have completed the course, you will need to login into your library website with your library card and account information. Check with your local library to ask them for more detailed instructions.
  • While you’re at the library…
Make friends with your Librarian and ask them if they want to help host a Wonder premiere in your area!