Friday, September 30, 2016

Career Guide

The Washington Post recently reported that as of 2010 only 27% of college graduates had a job relating to their major.
In industries like healthcare, where job openings are projected to grow by 19% over the next decade, it’s more important than ever to show students the career options available to them and the steps needed to attain their career goals.
In order to address these issues, our team at created a career guide for healthcare which highlights several paths of study, specializations, and medical job positions at all degree levels.
We know you’ll agree that it’s important to set learners up for success, which is why we hope you will join us in sharing our healthcare career guide

From the Bench with Francis: Fabulous Faces at Sea: The 2016 Craniofacial Cruise

by Francis Smith

From August 6-14, 2016, I hosted a small craniofacial group cruise called “Fabulous Faces at Sea: The 2016 Craniofacial Cruise” aboard Norwegian Cruise Line’s newest ship Escape, on an 8-night cruise from Miami stopping at St. Maarten, St. Thomas (US Virgin Islands), Tortola (British Virgin Islands), and Nassau (Bahamas) before returning to Miami.

Last summer (2015), before I moved from Calgary to Denver, I came up with an idea to host a craniofacial group on a cruise. Initially it was to be a Treacher Collins syndrome (TCS) cruise. After I first broached my idea on Facebook, a travel agent in Denver who has a granddaughter with TCS agreed to help me plan and organize my group cruise. After I moved to Denver, I met with her and we started working together on my idea. As a travel agent, she was able to find the right cruise line, ship, itinerary, dates, and pricing for our potential group. After comparing the major cruise lines, their itineraries and how they could help our group with pricing and availability of emergency medical services for our passengers, my travel agent friend and I settled on Norwegian Cruise Line, which ticked all the right boxes for us. We agreed on an early August 2016 Eastern Caribbean itinerary on Norwegian’s Escape, their new ship that was launching in the Fall of 2015.

Later on, the CEO of Courageous Faces Foundation, whose board I was now on since I moved to Denver, got on board and provided invaluable advice to us on how to better organize and promote this cruise. She suggested marketing it to a wider audience (any craniofacial condition) as well as ideas for promoting it. She also advised me to provide workshops and other activities aboard ship and ashore specifically for our group, to make this not only a fellowship cruise, but also an educational opportunity. The cruise now became “Fabulous Faces at Sea: The 2016 Craniofacial Cruise”. We remarketed it using the suggestions from my Courageous Faces Foundation board CEO. I also left open the possibility to repeat the Fabulous Faces at Sea Craniofacial Cruises as an ongoing tradition either annually or biannually in the future, and we discussed aiming future FFAS Cruises towards adults with craniofacial conditions, since families are already well served by the Children’s Craniofacial Association (CCA) annual family retreats I have attended regularly for a long time.

This year’s group was a small, intimate group, with me, the travel agent and her granddaughter with TCS and her family and extended family, as this was my first time hosting it (so it was our trial run).
Spring and summer 2016 came fast, as our bookings were finalized and paid for, and we arranged flights to Fort Lauderdale and a hotel to stay there the night before the cruise. A pleasant surprise came to me a week before the cruise—my mom got the opportunity to join our group for the cruise, and she was booked in a room next to mine and she was booked to fly right down from Fort Wayne, IN (where she lives) to meet up with the rest of us.

On August 5 we all traveled to Fort Lauderdale to stay at our pre-cruise hotel, and my mother met up with us there after she flew down from Indiana. We all got to know each other, and Mom got to meet our group and know them including the darling little girl with TCS.

On August 6 we embarked on Norwegian’s Escape out of Miami. Our group had dinner together in one of the main dining rooms that evening to kick off the cruise. Over the course of the cruise, we ate several more meals together as a group. The rest of the time, Mom and I shared meals together as mother and son, and relaxed together on the sun deck at the stern or in the atrium with piano music.

On August 7, the first full day at sea, I hosted our group for a seminar in one of the shipboard meeting rooms. In this Q&A session, my mother and I both fielded questions from the rest of the group. I was able to share many of my own life experiences as a person with Treacher Collins syndrome, what I have done with my life (my career as a research doctor in craniofacial biology), and what I enjoy doing (they were particularly interested in my talents in piano, violin, and art). My mother talked about her experiences parenting me and 11 other children all with special needs. By sharing our experiences, I was able to encourage the others with my story and Mom encouraged them in regards to raising children with special needs.

On August 10, our whole group did a planned group-specific shore excursion on the island of St. Thomas (US Virgin Islands), visiting the Coral World sea park and adjacent Coki Beach, just to be together in fun and fellowship.

On the final day at sea (August 12), our group had a private ice cream social in the ship’s board room, where we enjoyed fellowship over ice cream provided by the ship.
During the course of the cruise, when I was not hosting events, I had plenty of time to meet many other people on the ship. I was an ambassador of sorts, as people got to know and love me when I shared my life story with them in the course of conversations with them. Meeting other passengers during the cruise provided me with an opportunity, as an ambassador, to raise awareness of craniofacial anomalies.

We disembarked in Miami on August 14, having had a wonderful time of fellowship and sharing with my group and being an ambassador to the other passengers aboard ship for the cause of craniofacial awareness. At the same time, the cruise was an opportunity for me to bond even more strongly with my dear mother; we grew closer as mother and son over the week as we relaxed together and ate together. To cap it off, I took my mother for a mother-son date at a French restaurant on the ship for a special meal together.

I consider this first cruise to have been a successful trial run for what I hope to be a continuing tradition of Fabulous Faces at Sea Craniofacial Cruises in future years. As I mentioned before, I want to target it generally more towards adults with craniofacial conditions like myself as our own way of gathering for fellowship and education. Families are already well served by the aforementioned CCA family retreats, but are still always welcome to join me on future FFAS Cruises. Future FFAS Cruises will provide more opportunities for craniofacial fellowship and education, as we improve our marketing and design for them. I would encourage more of us in the craniofacial community, not just affected people and families, but also medical and research professionals to join us on future cruise adventures (perhaps medical and research professionals in our field could share their perspectives to our group in workshops and other activities on our future cruises).

#FlashbackFriday: A Love Song for CCAKids

A great song with a great message on a Friday to celebrate Craniofacial Acceptance Month. Hopefully, after you have wiped away the tears, you will feel the hope and strength in Larry Whitler's words and images. Thank you for your love and creativity. 

Our friend, Larry Whitler, of AM Ocala Live made this video for our CCA Family. He's been a big supporter of our efforts to make the world a kinder place and now he's created a love song for kids with differences.

Thursday, September 29, 2016

Three Cheers for Volunteers!

CCA is fortunate to have volunteers serving in many capacities – awareness, fundraising, networking, and more! They help push us closer to achieving our mission and vision. One of these volunteers is Khadija Moten.

After graduating with her Bachelor’s of Science in Healthcare Studies, Khadija was interested in pursuing an internship to give her more insight into the types of opportunities she may pursue with her career. Interested in nonprofits, Khadija reached out to CCA to see if we had any internship opportunities … and we do! Since coming on board as a volunteer and intern, Khadija has helped us with our marketing efforts by creating social media posts and graphics, press releases, and community outreach. She’s also heading up the effort in Dallas to collect ink cartridges to send a family toretreat using the funds raised. Khadjia has done an excellent job at spreading the word and for her effort and time, we give Three Cheers for our super volunteer, Khadija Moten!

Wednesday, September 28, 2016

3 Ways to Encounter A Child With Special Needs

By  Jeanine Ewing

I frequently end up in conversations with moms who have typical children, and we almost always end up on the topic of what-do-I-do-when-my-kid-sees-someone-different.  Unfortunately (or fortunately, as it may be), being a mom of two girls with very different special needs, I often get asked this question.  It’s valid and even really a necessary one for those who genuinely want their kids to be exposed to people of all varieties.  I admire those parents who strive to answer this question.  

The question remains, What do we do to make sure we value those people who sit on the fringe of society because of their differences?  How do we welcome them and move beyond mere tolerance or acceptance?  Let me offer you a few practical tips on how to encounter a child with special needs.  These are all written from my own experience as having children who are different.

1. Don’t be afraid to approach the parent first.

So many times I see a mom whisk her kid away in embarrassment upon quick appraisal of Sarah’s visible differences, and I wish that she would have had the gumption to simply approach me.  Yes, it takes courage.  Yes, it will lead you outside of what’s comfortable, but so what?  Is anything in life that’s worth much at all truly comfortable?

On the few occasions when a mom’s child makes a comment or asks a question about Sarah’s craniofacial condition and she actually walks over to talk to us, I am flabbergasted – in a good way, of course.  But I always welcome them with a smile.

You see, most of us caregiver-parents are more than happy to answer your questions.  Naturally, they should be thoughtful ones.  Nobody wants to hear something like, “May I ask you why your child has such a weird-looking face?”  But if it’s phrased with sincerity, we will almost always be open to discussing it with you, because it does two things – one, it educates you about our child’s differences (which eliminates or at least drastically reduces the fear factor), and two, it allows us to engage in meaningful conversation with each other.  You and I are both left enriched and better for it.

My first point is to merely ask.  Say to your child after an uncomfortable question or outburst, “Well, let’s ask that child’s mommy over there.”  And then approach us with a smile, saying something like, “Excuse me, but my child and I were wondering if it was okay to ask you a few questions about your daughter.  We notice she’s different, but we’d like to learn more about her.”

2. Use common courtesy.

This point should go without saying, but unfortunately it needs to be frequently reiterated.  When you see someone in a wheelchair, someone with leg braces, someone who drools or talks loudly, just smile and make eye contact.  Seriously, do you know how impressionable this is?  And how lacking?  I mean, all it takes is for you to acknowledge that my child is a valuable person.  You don’t need to immediately delve into a deep conversation about life and death (though that certainly may happen naturally on occasion).  All you need to do is smile, wave, say hello, and move along.  No harm, no foul.

What this does is model to your own children that people are people, regardless of differences.  It also may invite further conversation with your child in private about how some people are born to look differently than others, and this is a good thing.  I realize at a particular developmental age children all want to be the same, dress the same, act the same.  But instill in them the concept that different is good at a young age, and they will be all the better for it.

3. Get to know the family.

If you become closer to the family as a whole, you may be surprised to learn that they are typical in some ways.  Yes, their lives may revolve around changing dressings or cleaning medical equipment.  They may have myriad appointments and multiple therapy follow-ups, but they are still a family.  They laugh.  They enjoy fantastic moments of enlightenment, closeness, and joy.

If you are brave enough to get close to them, you may find a kinship or sense of camaraderie with their lives.  Families who have kids with special needs offer a unique perspective to the world – while very much mainstream in their interests and lifestyles (like going to work, cleaning house, cooking, etc), there is a rare depth to them that does not tend to exist in typical homes.  Get to know them.  Befriend them.  Don’t be afraid to get close to those who are caregivers.

Yes, suffering is uncomfortable.  To be faced with it on a daily basis can be excruciating.  I realize that our children’s visible differences are raw reminders that suffering exists and can be ugly and unbearable.  But don’t let that stop you from a potentially life-changing relationship with both the parents and children.  It’s likely to be a mutually beneficial situation.

Jeannie Ewing is a writer, speaker, and grief recovery coach.  She is the co-author of Navigating Deep Waters: Meditations for Caregivers.  Jeannie was featured on NPR’sWeekend Edition and Tony Agnesi’s radio show Finding God’s Grace.  For more information on her professional services, visit her websites

Text Copyright 2016 Jeannie Ewing, all rights reserved.
Image Copyright 2015 “Disability” by gmwolford on Pixabay and edited in Canva by Jeannie Ewing.

Tuesday, September 27, 2016

Growing Into Advocacy

In this piece, originally posted to The Mighty website, Cynthia Murphy writes about her experience living with and advocating for those affected by Treacher Collins Syndrome. Though initially reluctant, Murphy took her advocacy work seriously to help improve the lives of others living with facial differences. Here is how Murphy found her voice as an Advocate for Treacher Collins Syndrome.

By Cynthia Murphy 

I wasn’t born an advocate for Treacher Collins syndrome (TCS), and if anyone had asked me what I wanted to be when I grew up (which few people did), it would have been the last thing to cross my mind. Like others with disabilities, I was just trying to survive and lead a normal life by pursuing my educational studies and working full time.
Later, I advocated for my friends and family because I had a law background and they didn’t. I did legal paperwork, helped get financial aid for students and wrote any number of letters to help any number of people. Yet I still didn’t consider myself an advocate, especially since a lot of what I did was an attempt to buy friendships.
Someone told me recently that she could not connect with others who had Treacher Collins. I think I might have been the same way when I was younger. I didn’t want to be in the Treacher Collins world. I wanted to be in the “normal” one. Unfortunately, the people in that world, most of them anyway, were the ones who judged. They couldn’t understand our differences; and in all honesty, we couldn’t fully relate to them either.
This year, I met two people older than I who have established careers and who are comfortable with who they are. They don’t care if other people are looking at them, and they made me question why I still do sometimes. Although our stories are different, they inspired me. About the same time I met them, I started posting articles and videos on social media. Immediately I heard from hundreds of people saying that I am an inspiration to them. Now, I get it. Advocacy is about awareness. It’s the bigger picture. It’s about relating to others in more ways than one.
There weren’t any books on craniofacial differences when I was growing up. I had no advocates. Thus, I was essentially alone in a sad, depressing world. I wanted to be part of so many things, and I couldn’t. Getting picked last for baseball or group projects in art, history, or drama is a horrible feeling. It happened to me all the time, and I hated it. When I advocate for Treacher Collins, I’m doing it for everyone who has ever suffered those feelings of inadequacy and exclusion. And I’m doing it for me.
Yes, I’m afraid sometimes. And no, I can’t always separate myself from the criticism I receive. When you’ve experienced ridicule, the last thing you want to do is speak out publicly and leave yourself vulnerable to criticism. Still, I feel I have a voice that stems from my experience, and I am committed to making it heard.
No one “kind of” has Treacher Collins — just as no one “kind of” gets bullied, “kind of” gets discriminated against, or “kind of” suffers from insecurities and depression as a result of all those. No one is “kind of” an outcast.
I’m advocating for the person who maybe only has the distinctive eye shape. I’m advocating for the young person facing his or her 30th surgery. I’m advocating for the people who, like me, have to function simultaneously between a sound and silent world. 
I’m advocating for myself, and I’m advocating for you.
Cynthia is not just an excellent advocate. She's also a fundraiser, who hosted a successful wrestling event last Sunday, September 25 in San Jose, CA to benefit CCA and other charities.

Monday, September 26, 2016

A Beauty with A Twist

By Rasheera Dopson 

Hi my name is Rasheera I have a craniofacial condition and this is my story! I was born with three very rare syndromes. VATERS Syndrome, Hemifacial-microsomnia Syndrome, and Golden Har Syndrome. These syndromes caused me to be born with several facial and bodily deformities—resulting in 101 surgeries in my life.

Growing up and having such a rare condition I didn’t see much of anyone who looked like me. My difference was so obvious and made me feel self-conscious most of the time, which was hard because I constantly felt like I didn’t fit in.  I always compared myself to other girls I would see in school, magazines, and TV shows and because my beauty didn’t look like theirs I felt ashamed.  Instead of embracing my difference, I did everything in my power to hide it. In my mind I just wanted to be normal.

Nevertheless, I came to a point in my life where I grew tired of rejecting and hiding my differences. I was sick of trying to fit into the norm, when I knew I wasn’t ever going to be normal. I knew that deep down inside, even though I didn’t have a face like everyone else, there was something beautiful about me. I just needed to figure out a way to find it; that’s exactly what I did. I began to change the outlook that I had of myself. I no longer saw myself as the girl with no ear, the one with a crooked face, but a girl with something unique. In making the conscious decision in accepting who I am, I began to find purpose in my difference. Instead of dismissing my difference, I began to embrace it. I began to refer to myself as a Beauty with a Twist. I came to the realization that although my face isn’t typical, it is beautiful and my beauty is worth sharing with the world.

So now I call myself an advocate for all the other Beauties with a Twist—fighting against low self-esteem in young women, especially those who are different. Knowing well the battle within between low self-esteem and confidence, I strive to encourage every girl near and far that it’s okay to be you. It’s okay to embrace your difference.  

The day I decided to accept my beauty was the day I let my beauty, my difference, change the world!