Tuesday, May 21, 2019

#WonderWednesday Fun Photo Collage, Pete and Dede Visit Capistrano Unified School District!




Laderra Ranch School 
Peter and Dede Dankelson visited the Capistrano Unified School District in California during spring break a few months ago. They spoke at a eight schools in the district and visited the Global Genes offices, spreading their message of kindness and acceptance. We hope you enjoy these images from their trip to SoCal. 

Many thanks to the educators, teachers, and students in the Capistrano Unified School District for their support. Keep choosing kind in everything you do!

Alisa Viejo School 
Aliso Viejo School 


Arroyo Vista School 

Don Juan Avila School 

Global Genes Offices

Don Juan Avila School


Global Genes

Las Flores School




Shore Cliffs School 

Dinner with friends!
Peter Dankelson, Morgan Mecklenberg, and Madelaine

St. Junipero Serra Catholic School


Vista Del Mar School 

Monday, May 20, 2019

#FaceEqualityWeek2019 Rewind: Stared Into Funkville

Photo Credit: Kara Jackman
Editor's Note: Jenna writes thoughtfully about a recent staring experience on public transportation. This story really demonstrates the need for a global understanding of facial differences, which is what we are all striving for during #FaceEqualityWeek2019. Nevertheless, Jenna finds a way through what was a tough morning thanks to her friends, family, and CCA. This post was originally published on the CCA Kids Blog at the end of December 2018. It received 4,223 views. Clearly, it resonated with our CCA family.
By Jenna Ottow
My day started out like it normally does.  I take a 25-40 minute train ride, depending on the day, from my apartment in Malden into downtown Boston where I work.  I get on at the second stop on the line so the train is usually fairly empty. As the train choo-choos along people pile in.  By the time it gets to North Station, a connecting hub, it’s jam packed. I usually enjoy the commute. I have a playlist I listen to, sometimes a podcast, but mostly I let my brain wake from the slumber of sleep to the bustle of the busy day ahead.  It’s a process.

On this particular morning, I was able to find a seat where I sat listening to whatever humdrum was playing in my ear as the other passengers milled around me.  I surveyed, like I’ve seen other riders do, not really looking at anything in particular, but changing the scenery with the tilt of my head. It was then that I could feel the stare.  A hard stare. Most of the time I don’t even notice it, especially when I am on foot. However, sitting still on the train it was hard to avoid and impossible to ignore. I was born with a rare, craniofacial birth defect called Apert syndrome that causes

onlookers to look.  They not only look, but they stare, point, sometimes name call, which happened lots when I was younger. Now, as an adult, I just avoid eye contact all together. This was not the case this morning on this train.  I was uncomfortable. I glanced over at my ‘admirer’ like a reflex. It was a younger woman, mid-20’s, headphone chords coming out of her ears and sunglasses resting upon her head, chomping on gum between her pearly whites, which I fantasized punching out. There she was...staring.  I smiled, politely, not really in the mood to exchange much more than a nod, then I looked away. I fumbled with my phone for the next song on the playlist. I’d like to tell you it was something inspirational like ‘Born This Way’, by Lady Gaga or ‘The Way You Are’ by Bruno Mars because that would have been terribly ironic and a bit sappy, but it wasn’t.  When the next song started I felt her stare again, look, and then look away. I was losing patience and suddenly felt so small. Thankfully, my stop arrived moments later. I was able to shuffle off of the train, wishing I could be another anonymous face in the crowd, but instead I knew I stuck out like a sore thumb.

Normally the “stares” don’t bother me.  Today it did. Like I said, when I’m on the move I don’t even notice them.  There is quite literally nothing I can do to change the way I look. Sadly, we live in a society where if you look slightly uncharacteristic than the rest of the population you are an anomaly that deserves every gawk, gape, stare, and judgment that’s sent your way.

I found myself in a funk for most of that day.  This state was a personal struggle. I don’t like to live in “Funkville.”  I am overall a fairly happy person, approachable, laid back, and friendly. But that day, I was in a funk.  I didn’t really want to talk to anybody. I was moody. Annoyances found me at every task, and well, I was just sad.  A lump lived at the back of my throat, taunting me to start weeping at any given moment throughout the work day. I couldn’t. I needed to be professional, I needed to stay composed and focused.  Bursting into tears in front of co-workers would ironically make me look…weird! I reached out to my partner towards the middle of the day. He’s literally one of the only people on the planet I know who knows how I feel. He too has Apert syndrome.  He’s been on the receiving end of the stares, the gawks, and the whispers. He’s felt the hurt. It’s literally the foundation of our relationship. He, of course, was comforting. Finding himself in similar or identical situations, he was able to empathize and agreed that this was indeed “Funkville” and it was okay for me to stay there. He validated my feelings. Sometimes that is all we really need to make it through tough emotions.  


The next day came, and so did the stares, as expected.  For some reason I didn’t find myself as effected, but there they were, and there they will continue to be.  Knowing that I can let those beady stares roll off my back is a comfort, but knowing that I can travel to "Funkville" for solace is almost as redeeming.  

Saturday, May 18, 2019

#FaceEqualityWeek2019 Rewind: How to Handle Awkward Questions About Your Baby




By Amy Mendillo
Amy Mendillo is a health writer-editor based in Providence, RI. Her forthcoming book, an insider’s guide for families of kids born with cleft lip and palate, will come out in Fall 2020. Visit www.parentsandclefts.com to learn more. 
(Editor's Note: We chose to run this piece by Amy Mendillo during #FaceEquality2019 Week because parenting during these infant years can be difficult when you first bring your newborn baby out into the world. While the world asks questions, you, as parents, must provide answers and advocate for your child. Amy shows us how its done, through anecdotes shared with her from other parents with children born with cleft lip and palate.)

When Jessa first shared the news of her infant son’s cleft lip and palate with close family members, their reactions surprised her.* Ordinarily, Jessa’s parents and relatives responded supportively when challenges arose. This time, unfortunately, some of their comments stung. “My mom doesn’t understand why my baby can’t breastfeed,” she started. “My grandfather refers to my baby’s cleft as a ‘harelip,’ and a friend’s mom has told me that I need to ‘warn people’ before they meet my baby so they aren’t caught off-guard by her defect.” If the remarks had not been so hurtful, Jessa noted, the collection of statements would almost be laughable. “I have handled these situations both well and not so well,” she added.

Interacting with family and friends can be a particularly sensitive topic for parents of kids born with cleft lip and palate (and for parents of children with other conditions). It is stressful enough to field a thoughtless remark about our baby from a stranger in the grocery store—or for that matter to simply anticipate that thoughtless remark. It can be quite a bit more complicated to hear similar comments from loved ones who make up our trusted support system.


As a health writer-editor working on a book for families of kids born with cleft lip and palate, I have interviewed more than 70 parents over the last several years to hear about their experiences with their child, particularly during their baby’s first year. In listening to stories and insights from these parents—and in some cases interviewing more than one generation within a family—I noticed that in many instances close family members lack basic information about cleft lip and palate and the related issues that occur during the early months of life, but also about how emotionally sensitive these topics can feel to a young parent. Jessa’s mom was not wrong to wonder why her grandchild could not breastfeed—after all, she was new to the subject—but she was also unaware that expressing that question repeatedly and in blunt terms might be distressing for her daughter.

Fortunately, there are ways to help these interactions go more smoothly—both for loved ones and parents. One chapter in my book offers techniques for close friends and family members to consider, including tools for active listening, ideas for supportive gestures, and specific sample phrases—all based on academic research, interviews with professionals, insights from parents, and my own experience as a parent of a cleft-affected child. I explain, for example, why the term harelip and other “hot words” don’t hold up anymore. (Jessa’s grandpa can learn the news from a friendly third party!), and provide anecdotes that reveal some ways parents feel about their baby’s appearance—so that loved ones can have a starting point for understanding our perspectives.

As parents, of course, we also play an important role in improving communications with loved ones. To start, we can be as honest and direct with family members as possible about our child’s condition, whether we are discussing medical information or our own feelings. These candid conversations may feel uncomfortable at first or even require advance preparation in order to get the words just right. We can also do our best to be constructive with family members when a conflict arises, make an effort to put ourselves in their shoes, and try—try!—to give them the benefit of the doubt, especially if we know they mean well. They, too, may need support as they process the news (even if that support doesn’t have to necessarily come from us). We must be mindful of generational differences—not to excuse old-fashioned biases, but to be aware of our parents’ personal histories, perspectives, and even conversational styles.

Sometimes our loved ones, especially grandparents, need time to learn more about their new family member’s condition. Right after her daughter was born, Kristen recalled hearing hurtful comments from her own mother.

“My mom came in to our hospital room,” she remembered, “and said she was concerned about ‘how they were going to fix it.’ I was pissed off. I didn't say anything because I didn't want to have a fight in the hospital.”

Then time passed. Kristen’s mother started to take care of the baby on Fridays. “After that, she didn't say anything about it,” Kristen continued. “Everyone fell in love with her lip, even my mom.” Sometimes, family members need time to wrap their head around a situation and accept it, even if their initial response sounds shocking and insensitive.

As parents, we, too, often need to seek the same time and space to process our emotions around the birth of a baby with a cleft lip and palate. My hope is that by hearing stories from others, learning ideas, and methods from current research, family members of all generations can adapt, cope, and even grow from it together.

*Names have been changed.

Thursday, May 16, 2019

#FaceEqualityWeek2019 Rewind: Dawn Shaw On "Allowing People To Be Human"



Editor's Note: This piece by Dawn Shaw, Author and Professional Speaker, ran on our blog on September 8, 2016 and on her personal blog, Facing Up To It, in 2015. During Facial Equality Week, we felt this piece was relevant to post again. 
Shaw understands adversity. She was born with a rare tumor, the removal of which left her face half-paralyzed. Here she talks about what she does in tough situations when others notice her differences...she turns them into opportunities!

Recently, an article about facial discrimination that was published online was brought to my attention. It is called Distorted Faces: Living with Facial Disfigurement  (Click the title to link to the article.) While I object to the use of the term “disfigurement," I thought the article was well thought out, well written, and brought up a lot of very interesting…if painful…points. I especially appreciated that it explored the psychology around physical differences in our society.

Thankfully, when I go out, I don’t see people recoiling in horror, doing double-takes, or demonstrating a startle reaction when they see me. Admittedly, after 48 years of having a different face, maybe I have developed a filter so I just don’t notice. However, I do a lot of very public things, like volunteer to sell merchandise for bands. Every once in awhile it occurs to me to look around and see if I can catch any sort of reaction when people see me. I seldom do. I give most people a lot of credit for internalizing their reactions. For the most part, people don’t remind me of my appearance.

Sometimes I catch people staring at me, sometimes I don’t. Usually I will notice children because they are so overt about it. Often I just smile, wave, and if they are close enough say “hello” to them, which lets them know that I’ve noticed that they are watching me. Acknowledging them helps demonstrate that I am a person, not an object.

In other situations, I will invite children to ask me about my face. I do this because I believe that it is important for them to acknowledge their curiosity and especially because it encourages the child to engage the person they are curious about directly. Often, children will ask the adult they are with “What happened to her face?” Except on very rare occasions, the adult they are with doesn’t know. Worse yet, the adult will make up an answer. I prefer to answer for myself, and am always thrilled when the supervisory adult supports and encourages my engagement.

Most significantly, once the child’s curiosity is satisfied, I am no longer interesting to them and they go about their business. 

How do I react when I see other people with physical differences? Of course I notice. But I have learned to internalize my reaction. I try to treat others as I prefer to be treated. Yet I am still learning to squash my assumptions. Those, too, are strongly associated with being human.

The article I mentioned earlier, while it addresses our human expectation regarding faces and an involuntary uneasiness when our attention is drawn to a face that defies the norm, it is not about “making it OK” to be afraid of someone who is different. However, those of us who are different have to allow people to be human.

We, meaning people with physical differences, are going to get noticed. I have been known to use this to my advantage.

However, as human beings, we should be allowed the expectation of being treated decently by other human beings: with respect.


Curiosity is normal. Rude behavior is never OK.

Want to read more by Shaw? She has written three books — her memoir, “Facing Up to It,” and a guide to developing resilience called “Friending the Mirror, ” and “Facial Shift, Adjusting to an Altered Appearance” for people who suddenly find themselves with a changed face. She hosts a webinar series also called “Friending the Mirror,” which focuses on appearance-related issues. Dawn also raises Icelandic horses and has a passion for live music.

#FaceEqualityWeek2019 Original: The Metaphor of Facial Difference by David Roche



By David Roche

The use of facial difference to symbolize evil is the most hackneyed metaphor in Hollywood.

I am facially unique. The left side of my face and neck is empurpled and engorged by “veins gone wild” in the form of a congenital venous malformation. My appearance was further distorted by multiple surgeries and heavy radiation in my infancy.

I am tired of seeing people like me portrayed as evil in the movies.

The list of disfigured villains in cinema is long: Freddy Krueger, The Phantom of the Opera, the Dick Tracy villains: Pruneface, Haf-and-Haf and Gruesome, Darth Vader, Scarface, Quasimodo, Igor. Charlize Theron's character in "Monster." And on. And on.

I recall seeing "Mad Max: Fury Road" on an airplane trip—every single one of the “bad guys” had a face that is in some way distorted.

Check out Disney’s take on their Lone Ranger villain: “Cavendish is a ruthless outlaw whose terribly scarred face is a perfect reflection of the bottomless pit that passes for his soul.”

Not that the point needed forcing. When facially different characters appear on screen, the viewer knows without question what they represent. They are evil and bent on revenge or murder. They loathe, and threaten to destroy, anything that is good, decent or cute. The exceptions are few and often as ludicrous as Disney's quaint Quasimodo (by Igor, out of Bambi). And ok, even with his pronounced propensity toward violence, I admit to liking Deadpool’s sense of humor.

I understand that movies are a visual medium, but what message is delivered to the veteran with the side of his face blown off or burnt in combat? Or am I just being sentimental here?

What does a child with a cleft palate think about herself when the Joker points to his scarred mouth to justify monstrous behavior?

The Lion King’s adversary is named Scar. We conclude immediately that he is wicked. An iconic family movie thereby teaches young children that any facial difference, however small, portends evil.

The Phantom of the Opera is defined by disfigurement and forced to live, hidden and fearful, in the dark. The exact moment you see the Phantom’s mask, you know that his love of music and the incredible gifts he has brought to the world of opera are meaningless. In the limited artistic vision of Hollywood, scars always trump talent.

Yes, there are exceptions, like the amazingly saintly Elephant Man and the more fully realized Rocky Dennis in "Mask." J.K.Rowling dealt creatively with Harry Potter’s facial scar in her books, seeing it as a source of self-learning, but the movies totally missed the point.

Face it. There is no cinematic metaphor that is more trite and shallow. Time after time, the facially different are barely human, driven insane by deformity, ready to retaliate with mutilations or murder. Their highest motivation is revenge— or maybe, on a good day, lust.

There is more at stake here than Hollywood’s artistic laziness and lack of imagination. This is not just a PC issue. The face is commonly viewed as the locus of the human persona and "face-ism" is a primary control mechanism in our society. We learn to judge ourselves and others by appearance. As we do, inevitably and inexorably, we find ourselves deficient. Forget measuring up to an ideal. The ideal does not even exist; it is a photoshopped construct of a marketing concept.

In my work as a performer and keynote speaker, I have met thousands of facially different folks who bring many gifts into the world and who, in fact, radiate beauty. You know what? I’ve never met a single one of them who carried a chain saw!

My favorite work is at middle schools, where my wife Marlena and I do a program (now a video) titled Love at Second Sight, about appearance and acceptability. What else is more important to a 12-year old seeking to find a sense of self and a place in the world among his or her peers? The children often confide in us about their self-perceived flaws and it is clear that in many cases, their perceptions have contributed to diminished self-image.

This is not only about children. The very first time I ever gave a talk about facial difference, a lovely woman came up to me, clasped my hand and said, “David, you are so courageous. It was terrible for me in school too, and I am still very embarrassed and ashamed of my freckles.” I looked away, thinking to myself, “Really!? The heartbreak of freckles!?” And yet I could see that her upset was real.

People continue to confide in me about what they see as their deficiencies, and not only the external ones. Early in my career, I was surprised to be invited to speak to an organization of adults with learning disabilities. I had thought we would be at opposite ends of the disability spectrum. I got a standing ovation and a good portion of the audience wept. These were people born before dyslexia and other similar disabilities were understood. Many had to spend their childhoods finding whatever accommodation they could on their own, secretly, with the constant threat of being labeled lazy or stupid. Their disfigurement was internal.

Here is the crux of the matter: my face is unique but my experiences are universal. Everyone has the fear of being in some way defective, unlovable and unacceptable to society. That is the true disfigurement.

Countless times every day, we are driven to moments when we turn away from our own images in dismay and despair. In this accumulation of vulnerability, our sense of self-worth is constantly assailed and eroded.

These moments are deliberately fostered by those who seek profit and power. It is out of the fear engendered in these moments that we purchase everything from eyeliner to SUVs. Predators of all sorts—financial, political, sexual—come to feed on our lack of self-worth.

The facially disfigured are presented as monsters. Inside ourselves we think we may be like them—unacceptable and unlovable to family, village, species and perhaps even to God.

Whole systems of belief have been built up that feed on our self-doubt: the doctrines of original sin, of caste, of karma. All serve to perpetuate the power and privilege of those who propagate them. Our negative self-judgments are encouraged by those in power because it is in their accretion that our souls shrink, we feel worthless and undeserving and we turn over our power.

I do know what it is like to be out in the world feeling monstrous. Every time I walk out my front door, I deal with stares, comments and the occasional cruelty, even to the extent of having had someone spit in my face in public. It is not the fact of my disfigurement that wears at my psyche. It is the fear and self-doubt of others. In fact, it is their worry about being rejected and abandoned, which they project onto me. That’s one of the jobs of the visibly disabled, to carry the weight of the fears of others so they can pretend that they are normal.

For most of my life, I was very ashamed of my appearance. Paradoxically, I have found wholeness through, and with, what at first seemed to be a grotesque flaw. Working through my fear and shame, I have come to discover that I am whole. My shadow side is on the outside, where I have been forced to deal with it.

I have learned that my face is a gift. (Not one that I was real excited about, at least not at first.) It is a gift because I have been forced to look inside to find my self worth. And that is exactly what everyone -- not just the facially disfigured person -- has to do in order to reach spiritual and emotional maturity. Inside each of us is the place where fear and doubt reside.

It is human nature to judge ourselves. We are social animals. It is part of our genetic heritage to be concerned about our social acceptability. This is a valid concern. But to put appearance at the core of that judgment is corrupting. Obsessed by our flaws, we can easily forget the true standards of assessment of self and others.

Let me suggest another way of looking at facial difference—one based on the truth of human experience. The artistic metaphor of a scarred face can be one of personal integration. Every person, no matter what their appearance, must reach the point of self acceptance. That magical moment is the key to living an integrated and full life. A character with facial difference can represent someone who has lived through that moment.

So please, Hollywood, could we try for a little more imagination and creativity? An about-face, perhaps? Don’t make me take out the chainsaw!



David Roche is a performer, humorist, author, and inspirational speaker that lives with his wife, Marlena, in Roberts Creek, British Columbia. He enjoys working with students of all ages as a motivational speaker. In 2018, he appeared in the film “Happy Face,” by french filmmaker Alexandre Franchi.  David enjoys spending each day with the love of his life, writing his next book, all while watching the cedars outside his window sway. Please check out his body of recent work at www.facebook.com/HappyFacethemovie


Tuesday, May 14, 2019

Makena Is College Bound!



Makena and her family are excited to announce that Makena will be graduating from high school this year. She will be headed to the University of Mary in Bismark, North Dakota. She wants to pursue a major in Radiologic Technology. Here are some photos for her high school graduation.

Last year, Makena hosted a screening of the movie "Wonder" for local Hazen, ND friends, families, and schoolmates. She raised money for CCA, and provided resources about craniofacial conditions, too. You can read about it in this blog post

Makena's family wanted us to share this good news with her CCA family to show that anyone can feel as "successful and worthy" as Makena does this graduation season. 
Congrats, grad!




Saturday, May 11, 2019

Rhode Island & New England Families: Join David Scott for Networking on Saturday, May 18th at 3PM

By Kara Jackman

Next weekend, Saturday, May 18th at 3PM at the Rochambeau Library in Providence, David Scott, of Bonded By Birth, will share his cleft story with others born with cleft lip and palate. He encourages families in Providence, Rhode Island and the New England area to share their experiences. The day will allow for personal networking and a musical performance by David Scott. Light refreshments will be provided. More information about this event can be found here at the Rochambeau Library in Providence events page. Click here to learn more 

Anyone with a craniofacial condition is welcome to attend the event in Providence, Rhode Island. Doctors and medical professinals from Hasbro Children's Hospital and Rhode Island Hospital will be on hand to talk about the many procedures and treatments that are available for cleft lip and palate. 

Providence was chosen as the location because of David deep roots with the hospitals in the area. He was born in Mystic, Connecticut and his parents chose Hasbro Childen's Hospital to have his pediatric surgeries. David's palate is still open, and has had surgeries at Rhode Island hospital with the hope that they could close it. After many surgeries David's palate is still open and he has found contented peace by using a prosthetic device. 

Scott believes that "his process is in motion when talking to one other person" about his cleft. His process will be fully engaged on May 18th with a group of people present to hear his story. 

His story is their cleft story. It was not until last year that he began opening up about his life experience of being born with a facial difference. "I didn't talk about it in high school or college." A few years after graduating from Worcester Polytechnic Institute, he had the courage to talk to his friend of 11 years about it. His friend responded with compassion, recognizing his condition, and affirming that he knew and that it had no affect on their friendship.  Now David feels that the cleft, "has no power over me." He wants other kids with clefts to not experience what he did. He wants individuals that participate in the event on Saturday, May18th,  to "feel empowered to share their stories" but do not have to if they choose not to. 

David hopes to have more events in the New England area and begin a mentoring program for children and young adults with clefts with his organization Bonded At Birth. He wants participants to benefit from his events and mentorship to understand that "it is okay to feel the feelings you feel." 

Another way that David expresses his emotions and thoughts about cleft lip and palate is through song. He is a master song writer, guitar player, and has a forthcoming EP with songs like "Can't You See" which speak directly to his feelings about himself, his self image, and how he moves through the world. You can hear more of his music on SoundCloud and Youtube

Thank you David for sharing your story and event with CCA Kids. We hope that you continue to do great things in the facial differences community in New England. 

International Face Equality Week Begins May 17th, CCA Joins Global Alliance







A week of awareness-raising events, media coverage and social media activity begins around the world today to promote ‘Face Equality’ — the fair treatment of people with facial and body differences and the elimination of disfigurement discrimination.

The 30 NGOs that are members of Face Equality International, the new alliance representing people with disfigurements, will be holding Face Equality Days in their own countries and regions — starting with the Sunshine Welfare Foundation coordinating activities in Taiwan on 17th May. Children’s Craniofacial Association will be publishing stories from our families and partners throughout the week.

Erica Mossholder, MBA, Executive Director of Children’s Craniofacial Association says, “We believe this week is important because it highlights our on-going effort advocating public acceptance for appearance diversity, and the FEI is doing the critical work of engaging with media and governing bodies to suggest tangible guidelines for how people with facial differences should be respected, represented, and included in the workplace, media, and beyond.”

Dr. James Partridge OBE, founder and Director of Face Equality International says:

“Wherever they live in the world, people with disfigurements — whether from cleft lip and/or palate, birthmarks, burns, acid violence, facial paralysis like Bell’s palsy, skin conditions such as psoriasis and vitiligo or after facial cancer — are disadvantaged by the way they are received. They experience isolation, bullying, ridicule and staring in public, low expectations in school, problems getting work and harassment in the workplace, abuse on social media and stereotyping in the media and films.

“The first International Face Equality Week demonstrates that the campaign for Face Equality has become a global movement. We aim to tackle three problems commonly associated with disfigurement — ignorance, fear and unwitting prejudice — by celebrating the achievements and ambitions of people with disfigurements and by bringing the disadvantages they face to public attention. Our growing movement demands respect and fair treatment for everyone, backed up by effective anti-discrimination protection in every country.”

In addition to Children’s Craniofacial Association, NGOs that are participating in the International Week include Smile Train, the Phoenix Society for Burn Survivors and FACES in the US, the European Cleft Organisation, the Smile Foundation in South Africa and Changing Faces in the UK.

[A full list of Members of Face Equality International is here: https://faceequalityinternational.org/thealliance/]

Wednesday, May 8, 2019

#WonderWednesday: Pete's Diary, Harmony 4 Hope, and Illinois Middle School Attuned For Kindness



Thank you to the students of Lake Zurich Middle School North in Hawthorn Woods, IL. Pete's Diary gave a #ChooseKind assembly at their school for 715 middle school students, who had all read the book "Wonder." The students did more than read and listen to Peter and Dede Dankelson speak, they took action too, compiling items for surgery care packages and hosting a fundraiser at their local Barnes and Noble store. CCA is grateful to North Zurich's thoughtful PTO who organized all of these efforts to help our kids. The money will be used to help CCA Kids gain access to medical care for life-saving surgeries, families to network at our annual retreat, and provide educational materials to new students. 



The good vibes continued as CCA and Lake Zurich Middle School North, widened the circle to include Harmony 4 Hope (H4H), a local Illinois-based nonprofit, whose mission is "using music to fuel scientific discoveries in rare disease, educate medical students and unite people for rare disease." Kerry Hughes, H4H Executive Director, lives in the Lake Zurich school district, so it only felt natural to be part of the festivities at the middle school. H4H encouraged students to submit songs for a #ChooseKind playlist dedicated to CCA Kids. The playlist was posted to Spotify. Take a listen. The students hope that these songs may help you get through a difficult day, lift your spirits, and provide inspiration.


Many thanks to Lake Zurich Middle School North and Harmony 4 Hope. We are honored to have all your donations, care packages, and Spotify playlist. 

Keep #ChoosingKind!



Tuesday, May 7, 2019

30 Stories, 30 Faces, 30 Years: Melissa McGowan




While talking about Pfeiffer syndrome recently, I was asked if there had been a moment of realization that everything would be okay and our family could handle this journey. Without hesitation, I shared about the moment I found CCA. CCA has given our family hope, has empowered us to be advocates for the craniofacial community, and has introduced us to strangers who quickly became family. With the support of CCA, we’re not just “okay.” We’re thriving.

                                           --Melissa McGowan, CCA Mother

Melissa and her husband Tom McGowan live in Canonsburg, PA. They have four beautiful children, Abby, six, Reese, four, Josie, two, and their newest bundle of joy, Elizabeth was born on April 4, 2019. Melissa enjoys taking her girls to the park and cheering on their favorite baseball team, the Pittsburgh Pirates (Go Bucs!). They are always playing interesting games, completing fun projects, and exploring the world with their Mom. 



Currently, Melissa is a proud, stay-at-home mother. She attended West Virginia University where she earned a Master’s degree in Elementary Education with a specialization in Mathematics. She taught for a while and then lent her talents to writing grants for an after school program after Abby was born. Melissa loves being home with the kids, though some days she does admit to missing the classroom.

Melissa and Tom found CCA shortly after Abby was born, while searching for more information on Pfeiffer syndrome. While balancing the art of early parenthood, they were also receiving a crash course in the world of craniofacial differences. Melissa reflects on this time, "It was definitely overwhelming at first with all of the testing, appointments, therapies, surgeries, specialists, etc, but our faith and our support system carried us through." All of this was possible because of the love of this superb mother.

Melissa shares the same worries all Moms have about their children's future, but thanks to the work CCA does in raising awareness and teaching empathy to students, she knows there is hope. "I still worry that Abby will be treated unfairly because of her differences, but I know that anyone who takes the time to get to know her will learn what we know to be true: she is a strong, resilient, beautiful person who is an absolute inspiration and joy.”

Let us celebrate Melissa and all the CCA mothers this Mother’s Day by building a more accepting world for Abby and all her CCA friends.

Saturday, May 4, 2019

30 Stories 30 Faces 30 Years: Emily Paulson






“CCA was critical to my parents’ education and understanding of my craniofacial condition when I was born in 1991 (remember, this was before the internet). I am so grateful for all of the relationships I have established since then, and I am especially thankful for lifelong relationships like I have with Erin Williams, Scott Guzzo, and all of my “mini-me’s.” CCA has helped me in being confident in my personal and professional life.” 

                                                           --Emily Paulson, CCA Adult



Emily Paulson is a registered nurse from Fargo, North Dakota born with Treacher Collins syndrome. She enjoys spending time with friends and family, especially her mother, Denise, and her two godsons. Music, concerts, travel, and watching sports are the many ways she chooses to share her beautiful life with those she loves. 


She says, “Having a facial difference has provided challenges which I have had to overcome, teaching me skills I have used to advance my nursing career. My craniofacial difference has allowed me to uniquely empathize with some of my patients. Frequently, patients ask me “what happened to you?” or “what’s your story?” When this occurs, it provides an opportunity for me to share my life story and the challenges I have faced.

People may not know I was once shy and insecure. As I grew older, I knew I needed to force myself to face challenges and risk possible failure. For instance, auditioning for theater, applying for nursing school, and traveling to Africa with my nursing group. Even though not everything worked out perfectly, it gave me the confidence to know I could be successful in both my professional and personal life. Even today, with all of life’s uncertainties, I know I need to take life one day at a time and continue to grow. I believe in myself, and will continue to put myself out there each and every day.”️

Erin Richmond and Emily Paulson