Tuesday, November 24, 2020

Share the Love this Giving Tuesday


The Rzonca Family from Cliffside Park, NJ share their positive experience with CCA Kids. The Rzoncas made use of our financial assistance program helping their family receive the best care possible for their daughter. 

"I knew for several months that my daughter would soon be facing her second surgery for craniosynostosis. It was a hard truth to face, and I kept on insisting on more opinions to feel confident that I was making the right decision. Once I felt assurance to proceed, I already had a specific surgeon in mind. However, I was very anxious over how expensive it would be, from the surgery costs itself to travel and lodging."  

It was through a Facebook group that I learned of CCA Kids. I applied expecting nothing, and received compensation for lodging, rental car expenses, and food. I was so grateful. Thanks to CCA Kids I had less to worry about as we approached my daughter’s surgery. I will forever be thankful for their kindness during this difficult time in my life."

How has CCA given your family hope and strength this year?

"It warms my heart to know that organizations like CCA Kids exist. They took a very tough time in my life and made it easier to bear. I am happy to recommend CCA Kids as a relief to any parent I know whose child is facing craniofacial surgery. Every little bit of help counts when it feels like your world is upside down as your child faces surgery."

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift $100 or more (at this link) will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift! 

Give NOW through midnight (12:00am PST) on Dec. 1, and we'll be sure to mail every $100+ donation a heartfelt incentive.

Thursday, November 19, 2020

CCA Keeps the Focus on What Matters


Our financial assistance program is very popular! Many families contact us during the most distressing times in their lives, like the Kemp family. Families need gas, flights, and hotel stays covered, so children can receive top-quality, medical care. Please read the impact our financial assistance program had on this family, and consider donating today to make this program available in the year to come. 

"We appreciate everything that the Children’s Craniofacial Association has done for our family. Without the help of the Children’s Craniofacial Association we would not have been able to make the multiple trips 300 miles North to Doernbecher Children’s hospital for our daughter Everly’s appointments and surgery. Their financial and emotional support has been such a blessing and relief to us. With the help of Children’s Craniofacial Association, we were able to stay multiple nights and be comfortable and focus on what was important, the health and recovery over our beautiful daughter, Everly."

How has CCA given your family hope and strength this year?

"The Children’s Craniofacial Association pursues a passionate purpose of giving hope and empowerment to families in need. Our family first-hand has experienced these acts of kindness and goodness from the Children’s Craniofacial Association. What continues to give us hope and strength through the whole process of our daughter’s cleft palate is knowing we have the support from such an amazing organization." 

Kemp Family

Medford, OR

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift $100 or more (at the link below) will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift! 

Tuesday, November 17, 2020

Give Hope: Just When Our Families Need It

Hope. We are all hungry for it. CCA devoted itself to providing glimpses of hope through March, April, and May as the COVID-19 pandemic overtook our lives. Then, in June, CCA shouted from the rooftops that "Hope" would not be canceled this year. While we could not have an in-person Annual Family Retreat, we would have one dynamic one online, reaching more families than ever before. Here, the Anderson share how these virtual gatherings, especially our online retreat programming injected some much needed positivity and hope for their family. 

We have been a part of CCA now for seven years and have attended each of those Retreats. The Retreat really is the one thing that we all look forward to all year. It is our favorite week of the year. Although we were so sad when the in-person retreat had to be canceled last summer, we understood that it was for our safety, and we knew that CCA would come up with something to connect our families during such a tumultuous time for so many of us. As everyone learned to navigate the world of Zoom, CCA embraced the platform and came up with a plan to connect us with so many across the country and other parts of the world. We were proud and excited to take part in the Treacher Collins breakout session. We connected with old families that we love to see every year and met so many new families, as well. I would like to think that for those who normally could not travel or had never been to a retreat, that this virtual platform was essentially a toe-dip into what the retreat normally has to offer, and now they may join us at future retreats.

How has CCA given your family hope and strength this year?

What gives our family hope and strength in regards to CCA is to see the new families and those precious babies become part of the tribe. It gives us strength to know what CCA retreats have done for our family and to know that those new families will also have that opportunity to form the strong bonds between both the parents and the children in future years. It is this hope that keeps us coming back each year to fill our cups with love, acceptance and positivity.

Anderson Family

Rockwood, MI

Give hope! 

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift of $100 or more (at the
link below) will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift!

Monday, November 16, 2020

Build and Talk with Lego on Friday, November 20th at 9:00AM Pacific/12:00PM Eastern


Join Lego on Friday, November 20th at 12PM Eastern Time to build and talk about cyberbullying. Learn more about the event at this Facebook event page.
Friday, November 20, 2020 at 12 PM EST – 2 PM EST (17:00 GMT/ 12:00 ET / 9:00 PT) 

Need help talking to your children about cyberbullying? Join us on YouTube this World Children’s Day to discover some fun LEGO activities to get the conversation started with kids. We’ll have a live Q&A session with UNICEF cyberbullying expert Rocio Aznar Daban, ready to answer your questions. LEGO Masters judges Amy Corbett (LEGO Masters US) and Matthew Ashton (LEGO Masters UK) will be hosting and building. Bring your bricks and join the conversation! 
YouTube.com/LEGO: 17:00 GMT/ 12:00 ET / 9:00 PT 
Find more information and your free cyberbullying ‘Build & Talk’ activity pack at LEGO.com/cyberbullying


Thursday, November 12, 2020

ConnectMed, CCA Team Up For Camp Cosmos Weekend Dec. 11 & 12th, Movies and More


Bonds that Endure the Test of Time


We are so grateful that the Guzzos are part of our CCA family. They supported us through thick and thin, because our community is always there for them, too. Read what they have to say about the challenge this year has brought to all, and how CCA rose to the occasion for them and others. 

"Our 26-year relationship with CCA began in 1994 when we attended our first of 22 Retreats. Old bonds are maintained and new ones are made at each Retreat. This year’s "Hope Is Not Canceled" Virtual Retreat was no exception! The connections before, during, and after it were needed and appreciated by us more than ever because of the lockdowns due to COVID-19.

The usual flurry of social media activity leading up to the Virtual Retreat: 1. Helped squelch our disappointment at not getting to physically be together with our CCA family and 2. Gave us something to eagerly anticipate during an otherwise dark time for our nation. 

Our family’s preparation along with Harlena Morton to host the Group Meet-up was a time of reflecting on previous Meet-ups and joining together to have the best possible Virtual Meet-Up. The Zoom meetings in preparation for my moderating the Virtual Symposium IEP session was a time of cohesion with presenters to get accurate information out to other families.

Seeing our CCA family virtually during the symposium sessions, group meet ups, presentations, dinner dance, and breakfast gave us some normalcy during the 4 days during which we should have been together with our CCA family. Virtual Retreat follow-up activities continued contact with our CCA family."

How has CCA given your family hope and strength this year?

"Our family’s faith in CCA’s mission being carried out by a minimal staff and an army of volunteers who are committed to CCA and each other was proven during this pandemic. The Hope Is Not Canceled theme of the 2020 Virtual Retreat showcases CCA’s strength—the ability to remain relevant regardless of the circumstances!"

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

Tuesday, November 10, 2020

#GivingTuesday: One Day Defined by Generosity

GivingTuesday is Dec. 1, 2020

GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world.

GivingTuesday was created in 2012 as a simple idea: a day that encourages people to do good. Over the past seven years, it has grown into a global movement that inspires hundreds of millions of people to give, collaborate, and celebrate generosity.

Follow along in the weeks ahead as we showcase some of our wonderful families' stories leading up to this Day of Giving. This week we share with you the Hall Family of Provo, Utah. 

"2020 has brought a lot of changes, and our family was disappointed that we would be unable to attend the CCA Annual Family Retreat in Texas this year.  Luckily, CCA was able to adjust quickly and pulled together an amazing Virtual Retreat, appropriately titled “Hope is Not Canceled.”  

We were able to connect again with old friends and make new friendships; we are so grateful for the relationships we have with other CCA families.  We loved watching the talent show and hearing the wonderful speakers.  

We are inspired by our awesome CCA Kids and Adults who are achieving so much; having a craniofacial difference does not have to hold you back!" 

"A silver lining of the pandemic is increased virtual connections; we have attended CCA virtual activities that we would not have been able to attend in person because of geographical reasons.  We have enjoyed art activities, concerts, and education for parents; all from the comfort of our home!  We are grateful for CCA – the connections, friendships and hope that we have!"

The Hall Family
Provo, UT

Donate today to our month-long #GivingTuesday fundraiser filled with gratitude. 

As a special incentive, every gift $100 or more, donated to this link will receive a customized, reusable CCA Starbucks Cup, which makes a perfect gift! 

Give NOW through midnight (12:00am PST) on Dec. 1, and we'll be sure to mail every $100+ donation a heartfelt incentive.

Saturday, October 31, 2020

Crystal and Lindsay Raise Over $300 with Fitness Fundraisers

Thank you PJ, Crystal for hosting a fun, Halloween-themed kickboxing for a cause class in Santa Clarita, California. $370 was raised and donated to CCA by fitness instructor and CCA Mom, Crystal in honor of her son, P.J. Crystal's friend, Lindsey, taught a Drumfit and Zumba class after the kickboxing class. It was two hours of fitness for a great cause.

Normally, Crystal's classes are free for all who wish to join here each weekend, but once a month Crystal encourages her students to give back. Each member of the class donated $20. Next month, she will honor another nonprofit. She started the effort because she missed going to the gym during the COVID-19 pandemic. With her background in fitness instruction, she took to the park to bring the gym to the people, while maintaining social distancing!

We really appreciate all the work that you have done to help the CCA community, including being members of the speakers' bureau, continued donations, and always advocating that others #ChooseKind when we encounter adversity.

Keep up the great work!

Friday, October 30, 2020

North Carolina Musician, Josh Daniel, 5 Points Realty and Geoff Endlich Make Huge $22,050 Donation To CCA

North Carolina singer/songwriter, Josh Daniel sang and strummed his way into our hearts over several months of quarantine with his “Couch Tour,” and has turned his personal pandemic pivot into an incredible opportunity to raise funds and awareness for nonprofits, like CCA.

In the middle of March, after many of Josh’s road gigs were canceled, he started singing and playing a set each afternoon on his porch or in his backyard. He called these two hour, daily concerts, The Quarantine Sessions. Hundreds of devoted fans showed up every day for “happy hour” at 5:00pm on Instagram and Facebook Live to watch him play and throw a few dollars his way via Venmo. Thirsty for entertainment, and something to look forward to, the “Jamily,” the name given to Josh’s fanbase family, kept the Daniels family afloat as Josh’s tour dates evaporated. 

After some three months of shows, and introducing his family, including wife, Kellie, daughter, Maddie, and son, Sonny, to the Jamily, Josh wanted to find a way to give back. In June, he raised $5,000 for Levine Children’s Hospital where Sonny receives medical treatment. Then in July and August, they auctioned off a guitar on Ebay, and all proceeds went to CCA.

Then, after learning more about CCA and with the momentum of the Jamily, Josh and Charlotte-based 5 Points Realtor, Briley Burris, got together to fill a YETI cooler with gift certificates, experiences, and locally-sourced goodies that was raffled off on Josh’s website. He advertised the raffle each day during his daily, Facebook Lives. Meanwhile, Briley asked local businesses in and around Charlotte to donate items to place in the cooler to sweeten the deal. The total value of the cooler and the items in it, reached a whooping $3,500 value.   

Ticket sales raised over $10,000 for CCA. Then, during the final weeks of ticket sales, Geoff Endlich matched the total amount raised to bring the final donation total to a jaw-dropping, ear-popping $22,050. All this love was in honor of the Daniel’s son, Jackson “Sonny” Daniel. Sonny was born with Apert syndrome which is characterized by fused cranial sutures and fused bones throughout the body. However, his diagnosis does not keep him from being a shining star, like his dad! 

Charlotte-based businesses such as SunHeist Eyewear, Legion Brewing, Salon Piper Glen, Common Market, Letty's on Shamrock, an AirBnB, among others, contributed items to the cause. We love how major-match-maker Geoff put it, “Let's do our best to make other people's lives better. Happy to throw a small rock in a lake and help make some kids smile and be confident!”

Absolutely, all of you are causing a ripple effect! From the bottom of our hearts, the staff, board, and the families that make up the CCA community want to thank you, Josh, Kellie, Maddie, Sonny, Briley, Geoff, and the entire Jamily, for this enormous act of generosity. The love from the people of Charlotte will be felt by families nationwide. Kids like Sonny will be able to gain access to life-changing surgeries, students will be educated about how to prevent bullying, and CCA will continue the work of making the world a kinder place one neighborhood at a time.

Learn more about Josh’s music by visiting his website at
https://www.joshdanielmusic.com/ and watch him go live every day at https://www.facebook.com/JDGratefulBand

Wednesday, October 21, 2020

Body Image, Self Esteem In Teens and Young Adults


Our friends across the pond at Freederm created a guide about Teens, Body Image, and Self-Esteem 
Please review it today as our teens and young adults are spending more time alone, online, and are distanced from friends. 

Share this far and wide as we feel this is a great resource for all. You can overcome these feelings of insecurity with the tips laid out in this piece. There is also a solid explanation of the various struggles that come along with puberty and getting older, too. 

Happy Reading!

Sunday, October 11, 2020

Aging Up, Aging Out: Transitioning Into Adulthood

Many feel that young adulthood is filled with the best years of your life. However, the experience for individuals and families affected by facial differences comes with some harsh realities fraught with unanswered questions. Where does our family turn for medical and dental care now that our young adult cannot go to the children’s hospital? How do we assist our young adult with their social and emotional wellbeing? How does our family ensure financial stability after high school or college? There is a way forward. Here is how to make the most of those teenage and twenty-something years.

Access To Medical and Dental Care

Some craniofacial teams will treat patients into their mid twenties, but others will not. What are you to do? Prepare early by having conversations with your physicians about whom they feel would be the best physicians to go to for treatment once your teen or young adult ages out of the children’s hospital. Ask good questions of your physicians to see which doctors are qualified enough to continue your teen’s care. Talk to friends in CCA. CCA adults or families with children slightly older than your own have a wealth of lived experience. Tap into this knowledge base and determine what information could be useful to your situation. Also American Cleft Palate Craniofacial Association, the accrediting board for craniofacial teams, partnered with us to provide a list of their accredited teams. This valuable contact information could be used to inquire as to whether there is a medical professional near you that could help with orthodontia, plastic surgery, or ear, nose, and throat issues that crop up as your teen moves into adulthood. If your young adult or teen moved for college, perhaps looking at the list of providers on the ACPA list will help them find a place for medical care in the state where they are attending university.

The best advice is to be kind, early and often! Cultivating positive relationships with your physicians and their support staff will benefit you in a big way in the long term.

Social and Emotional Wellbeing

Aging out of the medical system is a huge challenge, but arguably finding mental health support can be an even larger one. Typically, when looking for psychological support, you are in the throes of depression, anxiety, or some other negative mood state making it difficult to plan appointments, keep up with medication, and pave new paths to service providers. Stigma-based barriers to care also prevent one’s ability to access care. A recent Boston Globe article reports that “in 2018, nearly 9 percent of the United States 18 to -25 year olds reported having had a major depressive episode in the previous year so severe that it hindered day-to-day life, according to federal data. Just over half of those young adults reported receiving treatment.” Young adults with craniofacial differences are even more unlikely to seek treatment for their mental health, after years of trauma and bullying.

With that in mind, it is vital that psychological services begin at a young age, and continue after high school graduation. Intentionally talking about these issues as a family is difficult, but could prove life saving. As part of the summer preparations between high school graduation and college or career begin, be sure to discuss with your teen the plan for treatment, and request an appointment with the social worker or psychologist on staff near the college or workplace where your child will reside. Again, as with medical care, go back to the craniofacial team for recommendations for providers. Even if they did not have a mental health professional on the team, the nurses and surgeons should have referrals on hand. Additionally, social workers or hospitalists may be able to help coordinate care moving forward into college or around work schedules.

Mental health is not all about getting the right provider, it is also inextricably linked to our social lives. As humans we are social beings, we need to be in the presence of others. If your teen or young adult is not going to college, perhaps look into work or volunteer opportunities, a day program, or some more structured support tailored to your teen’s needs. During the ongoing COVID19 pandemic, creating community is hard work. You have to seek out and implement new ways of getting your social needs met. Searching for online gatherings around a favorite topic through the website Meetup.com, or joining a support group filled with others who have experienced similar challenges in their lives can be life-affirming. In addition, nonprofit organizations, museums, and cultural institutions are offering a variety of different virtual programming opportunities that could allow you to grow your personal network. Reach out to CCA for referrals and other ideas if you are feeling stuck.

Legal and Financial Stability

Legal and financial issues are overwhelming for all, but taking the process one step at a time will lead you on the path to success. For the medically complex child, start today by asking questions and doing research on everything from power of attorney, court approved guardianship and more. Organizations like Family Voices, Legal Zoom, your regional Arc, and local-state legal aid are extraordinarily helpful in the quest to find answers to what could be the right fit for your family’s needs. A conversation with a lawyer or law school student could reveal a way forward when planning for what works best for your family and child.

Financial resources are available, too. Financial advising is not only for the rich and famous. Some banks offer services for families that have more moderate incomes. Nonprofits, like the Arc and Family Voices, can help families of all socio-economic backgrounds. Do your homework on websites like Special Needs Answers. Additionally, Merrill Lynch and MetLife have life insurance and special needs calculators to help prepare you for conversations with a financial advisor, too. A financial advisor will be able to walk you through how to keep government aid, like medicaid, or state-sponsored health insurance in place after the magic ages of 18 and 26.

Young adulthood is an exciting time. We hope these tips make the transition from teen to twenty-something smoother for your family. For additional tips about transitioning into adulthood, please read our newest educational overview, Healthcare Transition: A Q & A Guide For Parents by Dr. Judy Lu Kim, MD and Dr. Jordan Kemere, MD, Assistant Professors at Baylor College of Medicine. Or review an older but still relevant piece by Judy Tyler, LMSW, “As Your Teen Gets Older: Preparing For the Next Steps."

Please feel free to reach out to CCA for more information. We would be happy to point you toward resources specifically tailored to your needs.

Patricia Simon's New Book Shares Story of Camp, Community, and Acceptance


“Simon and Patty Go To Camp” shows the power of community on the journey towards self acceptance. 

Children’s Craniofacial Association (CCA Kids) is excited to announce the publication of Patricial Simon’s new children’s book, “Simon and Patty Go To Camp.” Patricia is an author, registered nurse, and CCA Kids Speakers’ Bureau member. This is Patricia’s fourth children’s book about Simon and his friends. 

The story chronicles Simon, a colorful cardinal with a cleft beak, and his friend, Patty, who also has a facial difference, as they go to camp with kids and animals also born with craniofacial differences. Patty’s sister, Abigail, joins them, too. The camp, influenced by CCA Kids Annual Family Retreat, is filled with friends that look and experience life just like Simon and Patty. A few of your favorite CCA staffers and community members are part of the book, too. 

“Simon and Patty Go To Camp” joins three other picture books about the adventures of Simon and Patty. In 2018, her first book, “Smile With Simon” was translated into Tagalog for kids in the Philippines taking part in a speech camp organized by SmileTrain. Patricia also published “Simon and the Buddy Branch” and “Simon and the Bully.” All four books are filled with beautiful illustrations, songs, and an enduring message of finding acceptance and how to be kind to others.

The stories were born out of a need that Patricia saw to help children with facial differences find self acceptance. She says, “When I dealt with my own adult cleft lip challenges, I went to the library, and searched for children’s books that addressed facial differences. I was saddened to find that so very few existed. I decided to write my own children’s books: ‘Smile with Simon’ and ‘Simon and the Buddy Branch.’”

Patricia affirms, “My own personal challenge opened up a new opportunity to give back, and to spread the word that there are good people in this world. A cardinal like Simon, the main character of the books, with his beak stitched up, can show us it is okay to be different, and to embrace our beauty and the beauty of others!”

CCA hopes to facilitate Patricia’s mission by distributing her books in our care packages for those having surgery, to elementary educators utilizing our anti-bullying curriculum, and to craniofacial centers that treat our children’s complex medical needs at major hospitals around the country. If you are interested in receiving one or more of Patricia’s books, please contact Khadija Moten at khadija.ccakids@gmail.com to request your copy. 


Patricia Simon is a nurse, patient advocate, speaker and author that lives just outside Chicago, Illinois. Born with a cleft lip and palate herself, she is engaged in supporting a number of nonprofit organizations including, Children’s Craniofacial Association, the American Cleft Palate-Craniofacial Association, Cleft Community Advisory Council for Smile Train, and Face the Future Foundation, affiliated with University of Illinois Health Craniofacial Clinic. Please purchase her books, enjoy the songs that accompany the tales, and find more at http://www.smilewithsimon.com

Children's Craniofacial Association, is a national 501(c)(3) nonprofit organization based in Dallas, Texas and was founded in 1989. CCA's mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look. To request free educational curriculum and additional resources, visit http://www.ccakids.org.

Tuesday, September 29, 2020

Jenny Gives Back and Shares Her Craniosynostosis Story

Editor's Note: Jenny Solymossy is my cousin. She lives in Wisconsin with her incredibly warm, kind husband Mike. She found CCA through me, this year, thanks to our marketplace. She offered to raise money through Color Street to celebrate Craniofacial Acceptance Month. Jenny was born with Craniosynostosis. She received surgery to correct it when she was 3 months old. Here is her story...

Purchase Color Street Here!

By Jenny Johannes Solymossy

I was born with craniosynostosis. For those unfamiliar with craniosynostosis it is a birth defect that results in the premature closing of the cranial sutures before the brain has fully formed (premature fusing of plates). I had corrective surgery when I was 3 months old to separate the plates and give my brain room to grow. The surgeon swapped 2 different plates near the front of my skull. 

My whole life I’ve had people comment on the scar (that my dad affectionately calls my smile) which runs across the top of my head from behind one ear to behind the other. Some of the comments have been just curious questions and some were not so nice comments from classmates. 

As a teen I was rudely reminded that I have one eyebrow that is flat/ doesn’t have the same curvature that the other one and as an adult I’m reminded of this “flat eyebrow” fairly regularly when someone new does my makeup for a special event or when I’ve had a makeup consultation at the makeup counter at the mall. The scar usually gets a comment or question from any new hairstylist that does my hair. 

There have been some tough moments and times where I’m sick of explaining yet again why my eyebrows are different or what the scar on my head is but at the end of the day I believe what makes each of us different and unique is what makes us special. I’m grateful for my parents who identified something was wrong and advocated for me. I’m grateful for a successful surgery that allowed me to live a long and full life, and as hard as some moments are with the teasing, comments, questions, those moments are a part of my journey, one that has made me a stronger person. 

Up until a few weeks ago, when I was talking to my cousin Kara, I didn’t realize l belonged as part of a group. I always thought I had this rare, fluke thing that I was born with that no one seemed to have ever heard of, and to date, I’ve only ever met one other person with the same condition. I’ve not gone through nearly the amount of struggle as some, but I hope by sharing my story I can help make a difference to someone.

Wednesday, September 16, 2020

Christian Hadjipateras' Mom Shares Her Parent Perspective

Christian Hadjipateras is part of our Craniofacial Acceptance Month speakers' week. You can watch his video about how he views acceptance of his facial difference below.

A few weeks ago his mother, Marianna, shared with us this testimonial about her experiences raising and caring for Christian. We hope you enjoy what she shared with us. Welcome to the CCA community, Marianna.

I have been wanting to write something for a long time now, ever since my son Christian got involved with your wonderful organisation.

Where to start? Christian was born in London, UK in August 1984. It was my first pregnancy and I had quite a few scans- nothing whatsoever had been detected. Christian was delivered by emergency C-section and because I had elected to be fully anaesthetised, my husband and close family all saw Christian before I did. The doctor wanted me to get my strength back before I met my baby. One day, my mum and my aunt had gone to the paediatric ICU to visit Christian and they saw a nurse taking a Polaroid photo of him : " To show Mummy before she meets baby ....." I later heard that some mums cannot accept their babies and somehow they thought a photo would "prepare " me in a gentler way..... Simultaneously though, I myself realised that if I didn't see my baby soon I may have suffered some sort of breakdown. My husband had been trying to describe what Christian looked like but it was difficult. I have to admit that I didn't even know what a cleft palate was let alone the many other Craniofacial abnormalities he had. .. No matter. It was love at first sight! For all of us. It transpired that the doctors were also very puzzled by the extremely complex and unusual combination of facial differences. They initially thought that the cleft went all the way up to the top of his head and that the frontal lobe of the brain would have been affected. It wasn't.

I will not dwell too much on what happened for the next twenty five years or so but suffice it to say that Christian underwent almost 50 surgeries. The life changing procedures took place in Paris, London, Chicago and Los Angeles.

I am not trained to be a counsellor but I am very open to to helping other parents in any way I can. I feel particularly strongly about this because when Christian was born we had no support groups to turn to. I realise now how profoundly VITAL this support is ....This is why organisations such as yours, Facing the Future in Chicago, and Changing Faces (founded in the UK in 1992) do such amazing work. I am very happy and proud that Christian is involved with CCA.

I wish with every fibre of my being that one day we can live in a society that is without prejudice, preconceptions, intrusiveness and tactlessness and that we will all see the essence of each other with our hearts and with eyes of love.

Tuesday, September 15, 2020

How My Microtia and Atresia Helped Me Find My Purpose

by Camilla Gilbert
edited by Kara Jackman

Browsing through Twitter a few months ago, we found Camilla Gilbert through a post she wrote about hearing loss, disability, and intersectionality with her other identifies – woman, African American, mother. Camilla has clearly accomplished so much that we knew we had to include her story in our Craniofacial Acceptance Month celebration. There are so many children in our community that were born with microtia or atresia, or have it as part of their syndrome, that need to read her words. With multiple academic degrees, a child, meaningful work, and more, Camilla lives the life of so many kids' dreams. 

Camilla Gilbert identifies as a black, deaf woman with bilateral microtia and atresia. For over 30 years, she has fought for people that are deaf, hard of hearing, and people with disabilities. “My lived experiences with microtia and atresia have included confusion, isolation, and pressures of societal expectations to be more “able-bodied” versus embracing my deafness. However, my experiences have taught me resiliency, dismantling assumptions, and genuinely being myself.”

All of this hard, internal work, which Camilla gladly undertook, began at an early age growing up in the West End community of Cincinnati, Ohio, a neighborhood with a tough reputation. Camilla saw it differently though, putting a positive spin on the place she called home for some years. In the West End Camilla says she “observed African Americans being successful as entrepreneurs, developers, and teachers. News media may call the West End ‘the rough side of town,’ but I want to change the narrative of my neighborhood. The West End taught me the importance of work ethic, being authentic, the importance of family, and loyalty towards the people who support you. Without my foundation of the West End community, I would not be the woman I am today.”

During her coming of age, she had the typical trials and tribulations that people with facial differences experience. She writes, “my life with microtia and atresia was a rollercoaster and still comes with challenges. Not being able to find anyone that can relate to your experiences is a very isolating and lonely experience. I recall crying myself to sleep and asking the universe, “why me?” and prayed for typical ears. Bullying was part of my journey beginning in the 6th grade when students were trying to prove themselves. I was typically the target of being attacked and teased. I managed my bullying experiences with my intelligence, ambition, and having the sense that good days would come (I had a vision for myself at a very young age). Also, I experienced curiosity from others with stares, questions, and awkward conversations about my ears. Students and strangers would stop to get a glance at my uniqueness, point, laugh, and walk away. However, during my elementary and junior high school years, my peers were not comfortable seeing my differences, and they made jokes out of my ears. They used to come to me, stare, point, and ask the question that I dreaded each day, “Why are your ears that way?” or “Why do you look like that?” These questions were a constant reminder that I was different where I just wanted to be a typical kid.”

With all the questions and bullying that continued into junior high, Camilla realized she had to adopt a hide-in-plain-sight strategy to get through middle and high school. Thanks to a headband and perfectly placed straight hair, she was able to cover up her differences. She said of the headbands, “I wore different headbands for over 14 years and dismissed my microtia and atresia and hearing impairment, and focused passing as an able-bodied, hearing person.”

Once she reached college, the hiding helped her pursue curricular and extracurricular activities among various students with which she went to school. She says, “College life at Central State University was the first time I did not have any disability services, and I gained independence with my education. However, I was still struggling with my acceptance of microtia and atresia and hearing loss. I continued to hide behind my cloth headband and even forgot the name of my condition. I went to some parties and met people while on campus, but remained feeling isolated. I had a part-time job at a retail clothing store where I developed a family with the women there. I graduated from Central State University with a Bachelor of Science Degree in Computer Science and Mathematics and thought I would have this fabulous IT job.”

Or so she thought!  

After a quick google search, Camilla discovered that the universe had other plans for her.

“I searched the term microtia and began to learn what it was. I knew the name but still felt alone because I did not know anyone else with microtia, so I put it on the back burner, especially since I was going to embark on the new journey of Motherhood. It wasn’t until I held my daughter in my arms for the first time, pure happiness and responsibility developed. Not only did I have the responsibility to care for my daughter, but I also had the responsibility to walk in my truth as a woman with microtia and atresia”.

A year after giving birth to her daughter she stopped wearing the headbands. Two years after that, she found a group of friends with microtia: the Hearing Loss Association of America and Ear Community. From both groups she “learned so much about hearing loss, how to be an advocate, improved hearing aid technologies, and a community of friends with similar life experiences.”

In 2013, she attended her first Ear Community picnic, which sounds a whole lot like CCA’s Annual Retreat. “The first Ear Community Picnic I attended was in Columbus, Ohio. I was not sure what to expect, so I walked towards the picnic shelter slowly with nerves and met with the picnic host Justin. Justin is an adult with microtia and shared experiences with microtia. I began to see babies, kids, and other adults with microtia, and it was a very emotional experience. Before this picnic, I never experienced being in a community with microtia. Parents came to me to get advice and reassurance that their child with microtia would excel just from my own lived experiences. The encouragement from the kids, adults, and the parents sparked a fire in my soul. The community has influenced my drive, passion, and advocacy for people with microtia. I switched my career path from IT to Social Services and Education.”

Clearly driven by this passion, she pursued a master’s in social work from the University of Cincinnati, and more recently is working on a Doctor of Education from Northern Kentucky University. Her current research focuses on disability studies and finding ways to weave in her lived experiences. Her article “Microtia and Atresia: Navigating a World of Difference” appears in the May/June Hearing Life magazine published by the Hearing Loss Association of America.). Her current project, she says, “includes creating a positive platform to highlight the accomplishments, successes, education, and resources for people with microtia.” Further she affirms, “I no longer want our differences to be associated with medical definitions. My motto is, ‘we are more than just our ears!’ She is founder of Microtia Life, LLC, (http://www.microtialife.com) and uses the hashtag #microtialife to spread her message on social media. She has a fabulous Youtube account filled with videos, too. Please check that out. 


Thank you Camilla for being so open and honest about your journey. We look forward to hearing more about your work, research, and life as you move into the future.

Monday, August 31, 2020

#ThankfulThursday: Madisyn's Barn Busting Yard Sale Raises Over $2200 in 2 Days

Hope truly is not cancelled. Our CCA families are still celebrating Craniofacial Acceptance Month in big ways during a worldwide pandemic. During the weekend of August 21 and 22, the Madisyn, Lisa, and Dave Alters hosted a huge yard sale that raised over $2200 in just two days. Everything you could imagine from clothes, housewares, records, games, and more were on sale and up for grabs all to help our CCA families. 

The yard sale was not all about raising funds, it was also about sharing and owning your story, too. Madisyn and her family were able to share their story with the many people who shopped. Lisa says, "THANK YOU” to all who attended our Yard Sale in Harmony, PA on Friday and Saturday August 21 and 22.
We had the opportunity over the past 2 days to meet some “AMAZING” people & share Madisyn’s story and surgical photos about having a Craniofacial Difference There was “LOTS” of work involved, AKA a labor of love, but it was a triple benefit...people got good deals, we purged stuff we didn’t need and CCA is getting a $2,250 donation. We were also able to maintain safe social distancing."

September is Craniofacial Awareness Month and to kick it off the Alter family have another Labor Day yard sale in the works. Friends and neighbors should stay tuned to the Lisa's Facebook timeline for the dates. Lisa says, "We are likely to hold the sale on Friday, Sept. 4th & Saturday, Sept. 5th from 8AM-2PM." (Still, as with everything this year, please check back to be certain.) 

Further, the Alters family encourages other families to commit to some fundraising too. Lisa says, "I would encourage our network of families to take this opportunity to do something similar, in an effort to support CCA, in lieu of our Annual Picnic & Gatherings in September! Even if you’re unable to donate ALL your proceeds, every little bit helps."

Forever innovative fundraisers, the family hosted a spaghetti dinner at the beginning of the year that spread awareness, fun, and built connections with CCA members new and old. The dinner and donated auction items raised a whopping $7,000 thanks to the hard work of Seneca Valley student Maddie Karchut. You can read more about it in this blog post.

Thank you, Madisyn, Lisa, and Dave for all you do for CCA!

Thursday, August 27, 2020

Hope is Not Canceled – We Celebrate Craniofacial Families in September 2020

Dallas, TX -- Children's Craniofacial Association celebrates its 16th Annual Craniofacial Acceptance Month this year. We continue to keep this annual tradition alive, while we socially distance and stay safe.

This year our theme is “Hope is Not Canceled,” as our mission statement pledges “to bring hope and empowerment to children and families affected by facial differences.”

While we cannot gather in person, we still believe that knowing someone out there shares your unique journey of living with a facial difference in your corner, makes life easier and so much better. This year we have pivoted our family networking to offer a bevy of virtual offerings -- our First Ever Virtual Retreat in June 2020, hosting ongoing virtual support group sessions, engaging in art therapy hours, creating storytelling workshops, and so much more. Our members will remain in solidarity with one another from the safety and convenience of home. Our CAM celebration this year will continue to connect families from across the country through the power and magic of technology.

Incidentally, going virtual has allowed us to reach more people than ever! Including those previously underserved who could not attend regional events. Now more than ever, we have hope and insight for a more inclusive future.

The fun continues during September as we encourage families to contact their local media and state government offices to recognize Craniofacial Acceptance Month and the amazing strength and resilience of our kids. All month long, we will have an awareness-raising sign campaign. Look for our CAM signs on a front lawn near you. From Monday, September 14th through Friday, September 18th, we will feature the stories of inspirational speakers each day on our social media platforms. And finally, during the third week of September, we will participate in Kindness Rocks, a fun project where kids decorate rocks with motivational sayings and leave them for others to discover in parks, on trails, and even in offices and classrooms!

All of these efforts bring awareness to those who look different, but who feel love, hope, and hurt just like you! Please join us because together we can end bullying and break down the barriers of discrimination. It takes a sustained effort to educate the public as we work together to foster compassion, tolerance, and empathy for all humans. These precious virtues will be just a click away this year! Everything will be online and accessible to all!

Children's Craniofacial Association, a 501(c)(3) nonprofit organization based in Dallas, Texas and founded in 1989, serves over 20,000 families per year and an additional 10,000 unaffected students in schools across the country. CCA's mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look. To request free educational curriculum and additional resources, visit http://www.ccakids.org.

Tuesday, August 25, 2020

Masks For All 2.0: Masks for Communication, Lip Reading, and Eye Protection

Masks For All...The Quest Continues

My quest to improve accessibility to masks continues. Back in March, I posted a video and created a blog post that you can find here about masks that tie around the head rather than anchor around the ears. Some people with craniofacial differences do not have ears, or like me, they wear hearing aids that take up real estate where the mask would fasten. Through the use of masks that tie to the head, an ear saver, or headband to bypass the ears, we discovered that we could overcome anatomical issues so that masks can fasten to the head. Now, as we head back to school or into work, we must move to the next level of masking up, focusing our attention on improving communication for those that lip read and keeping eyes safe. 

Lip-Reading Masks

Teachers will be back in classrooms with their students. People will be back in the office a few days of the week. All of us will be the need to wear a mask. Many people that are hard of hearing or deaf depend on lip reading to understand another person. In the video above, I tested out a mask with a clear plastic hole around the mouth for easy viewing of the lips, only to find that the clear plastic easily fogs up. After posting this video to my personal Facebook account with an inquiry about what to do, many responded with great answers. Some shared that a drop of dish soap would help, others said I would need to go to the scuba store to buy defogger used for scuba goggles, other said try some Rain-X. All of these were great suggestions and I did want to try all of them, but cost and toxicity forced me to try the dish soap first. I decided to grab a tiny bit of liquid soap, a tissue, and smear it across the inside of the clear plastic. It worked! The mask did not fog up, and my lips could easily be seen moving without the mask fogging up. Check out the video below to see the positive results. (I moved the camera around a bit so you can see the mask from all angles.)


Face Shields To Protect Eyes

Face shields are great, but I had lots of questions. Will they protect others from contracting COVID-19 from the nose and mouth? Will they protect your eyes?  I saw people wearing them, and thought maybe this could be a good solution for the communication barrier issue, but quickly concluded that there was not enough coverage around the mouth and nose. Water vapor, released from the mouth and nose, will get into the air on all four sides of the face shield. However, the shield is great for eye protection, preventing COVID-19-laced droplets from entering your eyes. If you have trouble blinking, or an inability to close your eyes, I would definitely consider either some protective eyewear or a face shield. 

All of that said, please let me repeat, the face shield does not provide adequate coverage for the mouth and nose. Please follow the Centers for Disease Control and World Health Organization recommendations for proper coverage of the mouth and nose on this great website. Around your mouth and nose, your best bet for protection is a mask with a clear plastic front. Make sure the fabric around it is tight around the face. 

You can watch my short video demonstrating eye shields below.

Where Do I Purchase A Clear Front Face Mask or Face Shield? 

In conclusion, please stay safe and follow the recommended guidelines put forth by the CDC and WHO. If you are out in public for long periods of time, I would highly recommend the use of a mask with a clear plastic window. Masks like this one will even benefit those that are able to hear, as many people lip read without even realizing it! Clear masks can be purchased from a variety of vendors. The one I demonstrated in the video is from Chic Me. Sadly, these did not fasten with ties around the head. They anchor to the ears. Another great place to purchase is from Rafi Nova, which has kids' sized masks. Rafi Nova sells masks that tie around the head or fasten around the ears. 

Face shields are important, too, especially if your child has any kind of differences around their eyes. I really love the Instashield demonstrated in the second video. It's lightweight, attaches to your favorite ball cap, and is made in the United States. Your kids will love it because they can wear their favorite team's hat while staying safe. 

We have to do whatever it takes to stay safe. I hope these tips help as we move forward into the fall and winter months.