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

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!

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. 

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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.

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.