Tuesday, May 31, 2016

Ask the Doctor: Midface in His 20s?



CCA posts a monthly blog series called, "Ask the Doctor." You can submit your questions to Annie Reeves (areeves@ccakids.com) 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

Question: My 23 year old son has severe type 2 Pfeiffer syndrome. He had the
midface surgery using his ribs at age 6 with good results, but with time, his
midface has become more retracted and his orbits bulge. We were planning another
midface at age 19, but due to many other medical problems, it didn't
happen. What are the options for a midface surgery at his age? I was told in the
past not a candidate for the RED device since he is done growing.

Answer:  The decision to use distraction or not has a lot more to do with the degree of movement that your son requires to get his midface where it needs to be rather than his age. Distraction can be done at any age. While it is perhaps true that adults may not make bone as readily or as quickly as children, a young man at age 23 should still be able to heal well using distraction.

Midface distraction, as you likely already know, involves making cuts in the bone to “free up” the midface so it is no longer attached to the skull. Then, the distractor is used to pull the midface bones forward slowly over time. The goal is to move the face forward slowly enough that bone healing “keeps up” with the moving midface but not so slowly that the bone heals solidly before you get the bones where they need to be. The pace of movement can be anywhwere from 1-3mm per day, depending on a variety of factors.

The advantage of midface distraction is that a much larger advancement can usually be achieved with this technique than with non-distraction techniques that require you to make the full advancement at the time of surgery. When someone has had previous surgery, such as your son, and where a large advancement may be required, scar tissue and the tightness of the soft tissue of the face may limit how much movement you can achieve with traditional surgery. Because distraction gradually stretches the soft tissue, the limitations of scar and soft tissue tightness can often be overcome with distraction.

In summary, it is my opinion that your son’s age should not automatically disqualify him from midface distraction surgery. In fact, depending on how much advancement he needs, distraction may be the best option to achieve the advancement he needs and provide a stable, long term result. I encourage you to discuss this option again with your surgeon so that your son’s overall health and his specific needs may be taken into account as you make a final decision on how to proceed. Best of luck!

Tuesday, May 10, 2016

From the Bench with Francis

Today we have an entry from one of our longtime CCA members, Dr. Francis Smith. He recently returned from a research trip and shares this update with us. We are looking forward to the culmination of these interviews he is conducting. Thanks, Francis!

From the Bench with Francis
by Dr. Francis Smith

In the middle of March this year, I attended an international craniofacial research conference in Ventura, CA, called the Gordon Research Conference on Craniofacial Morphogenesis and Tissue Regeneration. Part of a larger series of Gordon Research Conferences, this one is held biannually, alternating between Ventura, CA, and Il Ciocco, Italy (hence, the next one, in 2018, will be in Italy). As a researcher, since I was in graduate (PhD) school years ago, I have gone to many scientific conferences in the US and abroad to present my research. Often I get to share not only my research, but also my unique connection to my research.

In advance of the conference, I made a poster about my ongoing public engagement initiatives and strategies for public outreach and fostering collaboration between researchers and craniofacial doctors.

Our conference was held at a resort hotel (designed by the late Frank Lloyd Wright’s architectural firm) with plenty of conference space and we took all our meals together in the spacious restaurant overlooking the Ventura Harbor.

On the day and a half before the actual conference, there was a Gordon Research Seminar for postdoctoral fellows (like me) and graduate students in which we presented our research to our peers, both oral and poster. I presented my poster on public engagement strategies and reconnected with old colleagues (and met new ones) from round the world.

On the day the conference itself began, I was happy to see many of my old mentors from London, San Francisco, and Calgary come in, as well as others I had met in the past through connections I made at previous conferences and other events. Throughout the rest of the week, I met many new colleagues (it is vitally important in my field to make as many connections as possible—it’s called networking) from across the nation as well as round the world.

Our days were filled with talks from eminent researchers about the latest advances in research concerning the genetics and molecular biology of embryonic development of the craniofacial complex, as well as craniofacial malformations (including some talks on Treacher Collins syndrome; they’re always finding some new culprit gene for it or something new about the etiology of it). 

Midday and afternoon were lunch and free time. I went to downtown Ventura a couple of times just to browse the bookstores and antique malls. I picked up an excellent condition 1946 textbook on oral surgery and walked around the entire harbor and marina, and once waded into the ocean. Later each afternoon there was a poster session (with posters all set up and people discussing them), then dinner, and a full slate of more talks into the evening, followed by social time with a bar on hand.

I presented about the need for us – craniofacial scientists – to reach out and educate the public (as well as government, craniofacial charities, and scientific organizations) about craniofacial anomalies and research. I also recruited more craniofacial scientists and professors in attendance to contact me about being interviewed in person (on video) in future; once I have collected enough interviews, I will make them available to the public and families of children with craniofacial disorders in order to educate them on the potential benefits of our research. 

I also stressed the need for ecumenical cross-communication between researchers and craniofacial doctors, so we could learn from each other and gain perspective from each other, through possible strategies such as attending each other’s conferences and having a comprehensive meeting one day for both sides of the field of craniofacial medicine, as a sort of Vatican II for the craniofacial field. Craniofacial doctors could learn a bit of the science underlying the craniofacial defects they treat, and we researchers could gain the medical perspective on craniofacial disorders from the doctors. I also mentioned the need to lobby the government about craniofacial issues and reach out to scientific societies and craniofacial organizations in order to disseminate our research findings. I also discussed my past and ongoing strategies whereby I have been a mentor to the craniofacial community, as well as reaching out to the public through my past talks around the world and my news media interviews.


All in all, this conference was a great way to reconnect with old colleagues, meet new ones, and spread the word about craniofacial public engagement.

Sunday, May 8, 2016

Happy Mother's Day!


Happy Mother's Day from CCA!

Did you forget a gift? You can still make a donation in honor of your Mom and the love and kindness she has given throughout the years.

Thursday, May 5, 2016

Artist Interview: Dana Wilson

We have three new webstore items for CCA! They are all commissioned stickers by artists who graciously gave their time and talent to make custom artwork for an artist-series collection. This new sticker is out of this world!

The "Kindness Matters" sticker, by Dana Wilson, reminds you to look out for the little guys around you. Dana designed our 2015 Choose Kind Day video and we asked her if she'd come back and design again for CCA. Check out our exclusive interview below to learn more about her work and how she chose to create such a cool piece for CCA Kids.

Interview with Dana Wilson, Artist


CCA: Where are you from?
DW: I’m from a tiny little suburb of Chicago, and after spending some time in Los Angeles for school and work, I decided I liked Chicago too much and came home.  

CCA: When did you first start drawing and illustrating?

DW: I remember always being into art, all the way back to using construction paper and markers and playing around with Play-Doh in our basement.  Even during the times of my life when I turned my focus to other pursuits, I always kept little sketchbooks and notepads and doodled in the margins of school notes.  I guess everyone does that, but not too many people are crazy enough to turn it into a career.

CCA: When did you start using a computer to create art?

DW: The first things I remember doing with a computer were playing games and using Microsoft Paint after watching my older brother draw a rose.  This was the early 90s, and I like to pretend I’ve gotten a little better since then.  I started working in 3D around 2001 because I wanted to make 3D games - only later did I decide to focus on animation.  

CCA: When did your art turn into more than just a hobby?

DW: I started college in computer engineering and it… wasn’t for me.  When considering whether I should stick it out or make a change, I had to answer that same question - is animation a career, or would I rather it stay a hobby?  As chaotic a career as it can be, transferring to study animation is one of the best decisions I’ve ever made.  From the start, it’s been the amazing friends and mentors I’ve met who have kept me going in that chaos.  

CCA: What’s your process like? How long does it take to go from idea to finished illustration?

DW: Even in 2D art, I use 3D software as much as I can, wherever it offers a shortcut.  So for these cartoony stickers, I created most of the characters’ bodies in 3D and added features like their eyes and arms by simply drawing over the models.  Since my focus has never been traditional drawing, I feel this process gives me a cleaner result much more quickly.  

CCA: Who are some of your favorite illustrators and artists?

DW: I wish I had a more specific answer here.  My tastes are all over the place, and it seems like every day I discover new artists who create unbelievable work.  I suppose that’s the magic of the internet - nothing limits how much we can find and fall in love with.

CCA: What’s your favorite illustration you’re done?

DW: (https://vimeo.com/66608356)  The piece of work I’m happiest with is my master’s thesis film, Why Are There Robots?  It’s both completely absurd and entirely honest and personal.  Of all the work I’ve done, Why Are There Robots? is the most transparent window into my soul - what makes me me.  And it’s okay if it doesn’t really make sense to anybody else.  



CCA: What inspires you?
DW: There’s inspiration all over my life - there has to be!  From the story to the music to the medium itself, videogames have always inspired me.  Movies and TV inspire me - they don’t have to be and most often aren’t animated.  My daily life, my friends, my family, and the crazy thoughts that happen when I’m alone inspire me.

CCA: What does kindness mean to you?

DW: Kindness often is something you don’t have to think about doing.  Others my see your actions as acts of kindness, but you just see them as right or normal things to do.  

CCA: What’s your motto?

DW: I’ve always held the idea of “simple yet effective” styles and work close, and a professor taught me to (almost) always say yes.  If I had to pick one thing I live by, it’s that I am awesome!  By that I mean that I know who I am, I have a very positive attitude about that person,  and I trust that I’m always going to make the very best decisions for myself.

CCA: Why did you agree to help out CCA? (We’re so grateful!)

DW: I got involved during the 2015 Kind Day campaign when I agreed to make an animated promotional video.  A relative was looking for volunteer opportunities for herself, saw the word “animation”, and immediately thought of me.  Of course it turned out to be a great cause, then the stars aligned, and I had enough time between projects to offer my talents to CCA.  

CCA: Five things on your list of things to do before you die:

DW: Live five lives.  If not that, live one life as cool as five.  

Wednesday, May 4, 2016

Artist Interview: Jennifer Johnson

We have three new webstore items for CCA! They are all commissioned stickers by artists who graciously gave their time and talent to make custom artwork for an artist-series collection. One of the new stickers you can order is this heart representing the strong bonds we share with our CCA Family.

The "We are Family" design, by Jennifer Johnson, encompasses our slogan that Beyond the Face is A Heart. Check out our exclusive interview below to learn more about her work and how she chose to create such a cool piece for CCA Kids.




Artist Interview, Jennifer Johnson


Jennifer with her Mom, Carolyn, and Cher

CCA: Where are you from? 
JJ:  Midland, Texas

CCA: When did you first start drawing and designing? 
JJ:  I first started drawing at age two. My mother bought me art materials to keep me busy during my hospital stays and rest periods at home. My decision to become a visual artist became clearer when I was seven years old, after I submitted artwork for a children's Christmas card design competition. I won first and second place!

CCA: When did you realize you wanted to pursue art as a career and how’d you go about it? 
JJ:  I've always known I wanted to be an artist – even before I was old enough to understand all that entailed. I’m primarily self-taught, with the exception of a few art classes in high school. Drawing portraits is what I enjoy most; however, it’s very difficult to make a living as a traditional artist.
As a result, I developed skills and an appreciation for graphic design and visual communications. I don't have a graphic design degree, but I spent years studying the works of artists I admire, reading books on design techniques and tools, and watching videos. In 2003, I began my professional career as a graphic designer. Since then, I have achieved many accomplishments with my creative life and business. Besides my day job at Century Graphics & Sign, I currently work as a freelance artist designing band merchandise for Essential Artist Services, a Nashville-based merchandise company that works with major names in the Music, Non-profit, Academic, and Business worlds. I’ve worked for clients including Rachel Platten, Green River Ordinance, Lauren Daigle, I Am They, So You Think You Can Dance, Harley Davidson, and Taylor Swift. To go to a concert and see your design worn by the artist or crowd is an experience that can only be described as euphoric!
Jennifer with Rachel Platten

CCA: What was it like for you growing up? What has been your experience with having a facial difference?
JJ:  Growing up with a facial difference wasn't always easy, but I was blessed with a loving family that supported me, and with friends who accepted me for me. Junior high and high school was a tough time for me. I was bullied terribly in 9th grade by some boys at my school. They stole my lunch and spit it back in my backpack, held a lighter to my hair on the school bus, and pulled a chair out from under me that resulted in fractured ribs. It was a painful time for me, but I am much stronger for the experience. I firmly believe that those experiences inspired me to be brave, to know the value in myself, to be kind to others and to stand strong in my beliefs. I think, in hindsight, growing up with a facial difference was a positive thing for me. It's made me who I am today, and I'm proud of who I've become.

CCA: What do you wish others knew about people with facial and other physical differences? 
JJ:  I wish others had a better understanding of the positive aspects of living with physical differences. Unfortunately, our society remains very appearance conscious. Although there can be serious stresses connected with having a facial difference in today's society, we can develop positive images of ourselves and lead full, rewarding lives.

Jennifer and her Mom, Carolyn, with Train
CCA: What do you do when you get discouraged? How do you combat fear and/or creative blocks?
JJ:  Discouragement and creative burnout happens to every artist sooner or later. When I’m feeling
discouraged, I count my blessings. I make a conscious effort to remember what’s good and going well in my life, it helps put things into perspective. I also create some downtime for myself. It gives me the opportunity to take a deep breath, let my imagination wander, and explore the world around me. Many of my successes came after periods of discouragement and failure. Discouragement is just a temporary obstacle.

Martina McBride with Jennifer & Carolyn
CCA: What’s your design process like? How long does it take to go from idea to finished illustration? JJ:  When drawing portraits, I always start with the eyes. Once I get the eyes right, the rest fits into place. The drawing process can take a few hours or even days, depending on what I want to accomplish. I’m almost never completely satisfied with the result, so I’m not a good judge of my work.

Graphic design creations tend to be more strategically driven. The process I follow is pretty similar to that of many other designers, and with  simple  goal:  to  ensure  the  client  get  the  highest  quality of work that meets the predetermined objectives.

CCA: You work a lot with musicians. Why do you think you connect with them? 
JJ:  I’m intrigued by the human face. It reveals so much about a person: their story lies in all the little details in their facial features. That fascination and my love of music has led me to create hundreds of portraits. When I create a portrait, it’s with sincere appreciation for all that their music has brought into my life.

CCA: What’s your favorite design you’ve done? 
JJ:  One of my favorite portraits I created was of Rachel Platten. I’ve been a fan for years and had to opportunity to see her in concert in Dallas last September. The night before the show, I posted my painting on social media hoping she or someone on her team would see it. Imagine my surprise when I logged on to find a personal invite to meet her backstage after her set! Rachel actually cried when I presented it to her. Being able to move someone with my art is the greatest compliment an artist can ever hope to receive. It absolutely made my night!


CCA: What inspires you? 
JJ:  Music is definitely an important part of the creative process for me. It’s rare for me to work on a project without music playing in the background.

I'm a big fan of “the little things." The smallest thing can make the biggest impact. You can change someone's entire day with a smile. I find inspiration in these little moments.

People inspire me more than anything else! My family and friends inspire me daily to be the best possible version of myself and support me in anything I choose to do.

CCA: What advice do you have for adults with physical differences when they are looking for jobs and marketing themselves? 
JJ:  Don’t let hardships and adversities keep you from reaching your goals and dreams. Embrace who you are, follow your dreams, and never give up... that's when you’ll start to shine.

CCA: What does a day in your life look like? 
JJ:  Every day is different. Today I might work on a corporate logo design, tomorrow a vehicle wrap, and the next a number of t-shirt designs. There’s never a dull moment. There are always new trends, new tools, new technologies, new theories, new sources of inspiration a creative mind never   stops learning.

CCA: What does kindness mean to you? 
JJ:  Kindness means being kind to yourself as well as others. Your sense of value and worth depend not on how you compare to others, but on the conviction that everyone is human and worthy of compassion.

CCA: What’s your motto? 
JJ:  I have a tattoo that says "Today I’ll create something beautiful." It reminds me to be inspired and inspire others.


CCA: Why did you agree to help out CCA? 
JJ:  I’ve been involved with CCA since the beginning. I can't think of better way to use my talent than to help others!



CCA: Five things on your list of things to do before you die?
JJ: 
  1. Find true love
  2. See a live concert at Red Rocks Amphitheater 
  3. Travel to Europe
  4. Attend the Grammys
  5. Make a difference, whether big or small.
JJ: Also, a fun fact: The first celebrity portrait I ever did was of Cher when I was 10 years old!