Get ready for Summer right now! Camp Cosmos helps Southern California kids born with facial differences connect with each other in a fun, and creative environment. The day camp is free to participants. Learn more about this great day on the ConnectMed website and in the flyer below.
Saturday, April 21, 2018
Friday, April 20, 2018
By Crystal Kouri
Our son P.J. was born with Treacher Collins. The birth was a surprise and an opportunity to exercise compassion for our son and other children born with the same syndrome.
My son, P.J., faced many challenges in a short time. He will continue to need more surgeries and procedures throughout his life. He spent the first nine weeks of his life in the NICU. He had a mandibular distraction and a G-Tube placed before he was allowed to come home. He has three more major surgeries scheduled this year. They include, one to repair his cleft palate, one to remove the hardware in his jaw, and one to remove parts of his skull to treat his recent craniosynostosis diagnosis. P.J. also needs a Bone Anchored Hearing Aid, or BAHA, which is not covered by insurance.
Little did I know that P.J.’s medically-necessary hearing aid would lead to an opportunity to help others, too.
While posting about his hearing device on Instagram (a platform that I use to communicate with other TCS moms while spreading a bit of kindness), Nathalie Gaulthier, my dear friend and owner of Le Petit Cirque, suggested that I do a “Go Fund Me” page to raise the money for his BAHA. I was reluctant about the idea, so she suggested doing a Le Petit Cirque show to raise the money. I found that idea more acceptable, because we would not only be raising money for P.J.’s medical expenses, but we would also have the opportunity to raise awareness.
I felt that the Le Petit fundraiser had a greater purpose than just raising money for the hearing aid. Circus performers were often ridiculed and called “freaks” as they were part of a spectacle called the “freak show.” Today, they are embraced and admired for their talents and differences. The cirque show and the history of its performers aligns perfectly with the message of acceptance we strive to portray through P.J.’s experience.
After agreeing to Nathalie’s idea for a charitable event, I began planning two shows that would be impactful and successful. Since I have been in the entertainment industry for 20 years, I decided to do my best to use my contacts to grow the show, and grow we did. Nathalie and I have been working around the clock. We want to not only put on a great show, but, also, to drive home the Choose Kind message focused on acceptance and positivity to others. We are so honored that Jono Lancaster, motivational speaker and founder of the Love Me, Love My Face Foundation, will be flying in to speak at the event. Erica Mossholder, Executive Director of Children’s Craniofacial Association (CCA), will speak about her organization and the support they provide to individuals living with craniofacial conditions. Everyone can look forward to a number of celebrity attendees that committed to being there at the performances on Sunday, April 22nd at 2PM and 6PM.
Considering the Le Petit Cirque show’s success and recognizing the importance of giving back, I decided to donate a percentage of the proceeds to CCA and the Love me, Love My Face Foundation. As a thank you to Nathalie, my handy husband and P.J.'s grandfather, also built new wooden platforms for Le Petit Cirque’s theatre chairs to create stadium seating for their studio where the event will take place and the young circus performers practice.
Organizing this event has been nothing short of a whirlwind of selflessness, people helping other people, and working together to create something beautiful and heartfelt. It has been a wonderful experience and I will be so proud to one day tell my son that he was the inspiration behind this magical show.
Two Le Petit Cirque Charity shows will take place on Sunday, April 22nd, 2018 at 2PM and 6PM in Inglewood, CA. The 2:00PM performance is sold out, but tickets remain available for the 6:00PM show. If you are in the Southern California area you can purchase tickets at this Eventbrite page.
Symposium: The symposium schedule is still being finalized and I thank you for your continued patience regarding this matter.
Retreat Photo for Program and signed Photo/Video Release Forms: Thank you to everyone who has emailed me your photo for the retreat program and your signed photo/video release forms. If you have NOT sent in one or both of these items, you will be receiving a separate email reminder later today. The LAST day to submit the photo and signed forms is May 1st.
Below are some important deadlines and additional information about the events taking place at the retreat. PLEASE be sure and read thru everything. J
: Deadline to email me a picture for our retreat program. This can be a family picture, picture of your child/children or an individual picture.
h: Last day to book your room at CCA’s discounted rate. Here is the online booking link and our discounted rate is $139 per night, plus tax. https://reservations.
: Deadline to sign up for child care during the Educational Symposium and the Symposium sessions you and your family will be attending. (Will send information for both ASAP)
: Deadline to let me know which meals you and your family will NOT be eating.
Annual Retreat and Educational Symposium Itinerary
Registration: At this time you will check-in with the CCA Staff and Volunteers so we know you have arrived. You will be given a retreat bag full of goodies such as a retreat t-shirts, name tags and more!
Retreat Kick-Off: We will kick-off the retreat with some announcements and introductions. Tacos and Entertainment will be provided for the families.
Breakfast will be provided
Group Meet-ups: During this time, you will have the opportunity to meet other families who have children with your child’s craniofacial syndrome or condition and families who have children within your child’s age group.
Lunch is on your own
Talent Show: Brought back by popular demand! Everyone loved last year’s Talent Show, so we are doing it again this year! If you plan on performing in the Talent Show, please email me the name of the performer and what talent they will be providing. Each performer will have about 2-3 minutes for their performance. Once all slots are filled, I will be sending you an email to gather additional information from you and assign you a time for your performance.
Family Night/Dinner Provided: Every year at the retreat we do a basket raffle during Family Night (which takes place night) and the families love it, so we are going to keep it around. For those of you who have never been to a retreat, let me explain how this works. We ask our retreat families to bring an item or basket with items which represents your hometown, city or state. Then we number each basket and set a brown paper bag in front of each item. We sell raffle tickets and you simply place your ticket in the bag of the basket you would like to win. Once everyone has purchased their tickets, we hold a drawing for each basket. It's really neat to see what everyone brings each year. Please don't feel like you have to bring something, this is just totally up to you. And last, but not least, if you are bringing an item or basket for our raffle please bring this to registration . Registration will be taking place from (If you have any address labels, you might want to bring them with you. It saves you from having to write your name on the tickets. Ticket prices are 20 for $5) Entertainment will be provided.
Teen Night (Ages 13-19): If your teen will be attending Teen Night I am looking for 3-4 Adults to chaperone teen night. If you are interested, please email me., they will be eating dinner with everyone else in the Grand Ballroom. When it is time for Teen Night, will have a place for them and the chaperones to line up outside of the ballroom and then we will walk everyone to the Pool.
CCA Adults’ Casino Night (Ages 20 and up): If you are a CCA Adult with a craniofacial condition and will be attending the Casino Night, you will be eating dinner in the Grand Ballroom. You will head to Casino Night at
which will be located in the Olympus room.
which will be located in the Olympus room.
Breakfast is on your own
Zumba: Our very own CCA Dad, Jerry Carchi, will be teaching a fun Zumba class for the entire family!
Group Photo: Each year we do a big group photo. We ask that you please wear your CCA Retreat T-shirt which will be provided in your retreat bag during Registration on Thursday, June 28th.
Pool Party/Boxed Lunches Provided: Everyone will head to the pool for an afternoon of fun. Boxed lunches will only be provided from
Dinner/Dance with DJ and Dinner Provided: Most of our families do dress up for this event, although not required. The attire isn’t formal, more like slacks, summer dresses, etc…
BREAKFAST PROVIDED: We will give our hugs, say our goodbyes, exchange numbers and start the countdown to the 2019 retreat!
Tuesday, April 17, 2018
Educators around the country rejoice! CCA's "Wonder" curriculum is now available with just a click of the mouse. Click the images below to access a PDF of the lesson plans that you can use in your classroom. Thank you to Carolyn Johnson for her hard work on the curriculum for our teachers.
Sunday, April 8, 2018
Saturday, April 7, 2018
How many of us can say we are award-winning writers? Well, CCA Kid, Ely Potter can now call himself one after writing an essay about The Future of Peace for the International essay contest organized by the Lions Club. Potter won $5,000 and a trip to New York City where he will be honored at the United Nations. Wow! How incredible!
His mother Jamie wrote to CCA to tell us that Ely said he wanted to send his gratitude to the organization. Ely says, "I want to thank CCA, all those people always made me feel like a normal person." Ely says, "He especially wants the kids like him to know they can really achieve anything they set their minds to. And just because other people call you different, different is sometimes a very good thing to be!"
First the Potters found out that Ely had won the district level contest, which pushed his essay further along to the state level in Delaware. Guess what, he won that too! Days later the family was informed via email that he won the Lions International Essay Contest. Here is the email from Lions Club International awarding him the prize.
Here is the text of Ely Potter's essay on peace and his impassioned plea for nonviolence.
Ely, we hope to see more work written by you. From one writer to another, keep up the good work!
There are many fabulous things that the human eye can see and our hearts can feel. Many of those things can be the darkness of pain and depression. Most of those feelings come from chaos and destruction. But know this now, the eternal feeling we know as peace can be stronger than those negative feelings. When there is peace no darkness or evil will corrupt our world. Earth might seem chaotic and deadly with all the murders and natural disasters going on across our planet. People are fearful; people are drained out; but how do we overcome these obstacles? I’ll tell you... with peace that many of us have stored somewhere in our DNA. Many brave men and women have reached out to the troubled ones and pulled them out of the deadly waters and into the peaceful light. Many people helped those who were in great danger by giving them fresh food, games, friendship and helped them back onto their feet again. Does this tell you peace can be in anyone?
It is time to let peace guide us not only in catastrophic times but on a day to day basis. Many people think peace is like what we see in superhero movies. A superhero isn’t just a man with laser vision but are ones that bring peace and sweep away the danger that surround our world.
Martin Luther King Jr is one of the most flawless examples of a peaceful figure. He says ”I have a dream…” more times than anyone. Well, I have a dream to persuade the readers who are listening to my words that peace can never be passed by. Peace is the strongest weapon. It may not fire bullets but it can change the most powerful substance in a villain or a normal average Joe; their hearts. Peace can also spread out of the blue, thus it can be created. In fact, you are creating peace right now. Do you see? Peace isn’t something you can physically create. It is created within your heart, brain and actions. Peace can be quietness, calm, and breathtaking.
Everyone who is reading this drop your blood boiling fists. If we all can have clean hands in this world, everything that came out of pandora’s box would be sucked back up except for hope which all of us hold inside our hearts. With weapons gone and hearts brighter than heaven itself, we will all enter a new world; a world with not only peace but non violence. I might not be in that new world but I can see it through my crooked eyes and my foggy glasses, and most of all I can feel it in my heavenly heart because as I said,”Peace isn’t an object that you can touch it's something you can feel.” This is how I see peace in the future as a nonviolent world. Even though I can’t see well through my two eyes I can see it clearly in my heart.
Friday, April 6, 2018
Orofacial Cleft Genetics Study Made Available Through Gabriella Miller Kids First Pediatric Research Program
The Common Fund’s Gabriella Miller Kids First Pediatric Research Program (Kids First) is pleased to announce that whole genome sequence data for the “Genomic Studies of Orofacial Cleft Birth Defects” project (Accession Number:phs001168.v1.p1) are now available for access through NIH’s Database of Genotypes and Phenotypes (dbGaP)https://www.ncbi.nlm.nih.gov/p
This Kids First cohort was selected for sequencing in 2015. Additional datasets from childhood cancer and other structural birth defects patient cohorts, selected through our X01 projects are forthcoming.
To view abstracts for additional Kids First X01 projects and estimated data release dates, visit: https://commonfund.nih.gov/kid
sfirst/X01Projects and the Frequently Asked Questions page for guidance on how to access the data.
For questions, please email: KidsFirst@od.nih.gov.
Thursday, April 5, 2018
Our friends, Sarah Miller, and her daughter Ellie, are selling note cards to benefit CCA. A private donor will make a $13 matching donation to CCA for each purchase made. Each $30 order will net CCA a $26 donation to help kids receive the medical care they need, quality, medical information, and the distribution of the book, "Wonder" to schools around the country.
Please read this family's story below.
Donate by following this link!
Donate by following this link!
At just 2 months old, our oldest child, Ellie, was diagnosed with a rare skull deformation called Metopic Craniosynostosis.
When a baby is born, the skull has open fibrous sutures (2 on each side, 1 in front, and 1 in back) which allow the skull to expand while the brain rapidly grows during the first year. By 1 year old, these sutures have usually fused together into hardened bone. Craniosynostosis is a condition in which one or more of these sutures prematurely fuses before it is supposed to, causing the skull to grow abnormally and the brain to not have enough room to grow. This deformation occurs in roughly 1 out of every 2500 births and has many different variations. Ellie’s specific form was a very severe case of the front/facial suture (the “Metopic” suture going up her forehead) to be closed upon birth or very soon after. This caused the front part of her skull unable to expand, constricting her frontal lobe and causing her head to have a triangular shape by 2 months old – which was when it was noticed by our pediatrician.
Ellie needed to have an invasive, 10 hour long surgery on her 5 month birthday (they would have done it earlier but she was too small, only 13 pounds on surgery day). Ellie’s “cranio-vault remodeling” (CVR) surgery happened on March 19, 2014. It took 10 hours, by her neurosurgeon and plastic surgeon at the Cleveland Clinic, and involved a very expensive “first haircut” resulting in a now hidden permanent zig-zag scar on top of her head from ear to ear. A large part of my tiny baby’s skull was removed, reshaped, replaced and screwed back together. We were in the hospital for 5 days, most of which was spent in the ICU, with our unconscious baby, bruised and swollen, drugged with morphine and the rhythmic sound of the breathing machine keeping her alive. The day when she finally woke up slowly, OPENED her eyes, looked at me, and cooed softly, is a day just as precious to me as the day she was born. Ellie came home with a tube still in her head for a few days but was back to her happy self and a whole new look (which, as a mother, also took a little getting used to…). She is so strong. It is crazy how, in just a matter of days, her resilience and smile made the whole ordeal seem almost like just a dream…
Unless you know about it, looking at her, you don’t know what she went through 4 years ago. Ellie is beautiful, loving, and sharp as a tack. Although still present, her condition is hidden to most, and we know how lucky we are that this was ALL we have had to encounter.
Families like ours are receiving this news all the time about their new baby. Many times they are completely blind-sided by the news like we were; thinking our child was ‘perfectly healthy’ going into our standard 2 month check-up only to find out there was a massive surgery in our near future.
For Ellie, we are raising money for the Children’s Craniofacial Association which is a non-profit organization dedicated to improving the quality of life for families affected by facial differences. CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to these conditions. This is a fantastic organization and one of the many we used throughout our cranio journey.
Cards for a Cause is an amazing fundraising program from Usborne Books & More and we are using them to raise money for the Children’s Craniofacial Association. Each box of greeting cards costs $30 and includes 30 individually cellophane-wrapped beautiful cards, many with special embellishments. You can choose “Thanks & Blanks”, “All Occasions” or “Kid’s Birthday”. Designs are not guaranteed and will vary. With each box sold, $13 will be donated to the Children’s Craniofacial Association. We have also partnered with my husband’s company, Graco Inc. who will be MATCHING every $13 we raise for CCA! So, that’s $26 raised with each box!
If you live in the immediate Stark County area, I can personally deliver your box of cards. OR you can pay for additional shipping
Please help us in spreading our story. It was very difficult for us to find support and information about Ellie’s condition at the time. Craniosynostosis awareness is very important and your donation to the Children’s Craniofacial Association can help families like ours during this stressful journey.
Thank You~ Sarah