Friday, January 13, 2017

CCA Family Spotlight: The Piacenzas

Meet Jayden & Sklyer

Sisters, Jayden and Skyler Piacenza, are always on the move! Jayden, affectionately known as JJ, is a 4th grade student at Carteret School in Bloomfield, NJ. Skyler is a big 1st grader at Watsessing School also in Bloomfield.

Karate is a passion for both girls. JJ is an orange belt, with a high kick to rival the Rockettes, and Skyler is a white belt, with a mean right punch! Watch out Power Rangers!

Girls with Santa this past Christmas

A born performer, Jayden enjoys dancing, singing, playing the keyboard and writing short stories. Skyler can always be found practicing her gymnastics, playing with Barbies or jetting around on her hoverboard.
Both girls enjoy spending time with their little brother, EJ; their dog, Cylla; and plenty of cousins!

They both have been bitten by the travel bug and love visiting new places. They enjoy going to theme parks to try the fastest rides, Florida for fun in the sun, and to the CCA family get togethers to see all the wonderful friends they have made!

JJ plans on becoming a surgeon one day and Skyler wants to be a teacher. As determined as these sisters are, we believe it will happen!

Thank you, Piacenzas, for sharing your story for our CCA Family Spotlight.
Super Sib Skyler at Retreat last June

Thursday, January 12, 2017

Thankful Thursday: Southwestern Community College Helps Staff Member with Apert Syndrome

Occupational Therapy Assistant Program students pictured here with
Casey Deakins (second from right) 

Casey Deakins is very thankful for the help and support she received from the Occupational Therapy students at Southwestern Community College whom made some clever adjustments to everyday office supplies she uses in her work as institutional development assistant. Deakins was born with Apert Syndrome which affects the growth and development of the hands and feet. The adjustments made by these students to these every day object make answering the phone, cutting vegetables, and stapling papers. Her gratitude moved her to throw the group of students a pizza party. The story that appears below was originally posted by Southwestern Community College. 

You can learn more about the school by heading over to their website

When you are around Casey Deakins, SCC’s institutional development assistant, you can’t help but be inspired and smile as she talks about overcoming the obstacles she’s faced in life.

Deakins was born with Apert Syndrome.

“I could be oh woe is me, Scarlett O’Hara over here, but I choose to be positive,” said Deakins. “I love what I do, and I take things as they come.”

Apert Syndrome is a condition that involves abnormal growth of the skull and face that is caused by premature fusion of certain sutures of the skull.

Other anomalies of the syndrome include webbed fingers and toes, as well as wide-set, bulging eyes that are tilted down at the side. Underdevelopment of the jaw usually causes problems with teeth alignment, and some are born with a cleft palate.

Apert Syndrome occurs in one out of every 160,000 to 200,000 births.

When Deakins realized she needed a modified staple remover, she asked Anna Walls, SCC’s occupational therapy assistant (OTA) program coordinator, for assistance.

Walls agreed and asked what else Deakins had difficulty doing.

The OTA students worked together to adapt a staple remover to maximize Deakins’ strength, putting her in the best ergonomic position.

The class then addressed other activities of daily living that Casey identified as difficult, including: answering the phone, cutting with scissors, drinking from a cup with one hand, and using a knife to cut vegetables.

Students worked with Casey on a trial run of various techniques and adaptive devices to increase her independence with the activities she had identified as difficult.

Once appropriate equipment was determined, Walls not only told her where to find the items - but that the OTA student club had paid for the order - telling Deakins Santa had come a little early this year.

“We were so happy to be able to work with Casey. She is such an inspiration to all of us,” said Walls. “Occupational therapy is about engaging people in the activities of life that are meaningful to them. Sometimes we focus on adapting the task by analyzing the skills a person has to use so that they can be independent.”

“We all have really enjoyed working with Casey. She has such a positive outlook and is so sweet,” said OTA student Krystan Inman.

Deakins had one more request of the OTA students and faculty, and that was to eat as much pizza as they could at the surprise party she gave them as a thank you for all they had done.

“It has been fantastic working with the students,” said Deakins. “A simple question I had turned into so much more.”

For more information about Apert Syndrome visit the CCA webpage devoted to this facial difference. 

Wednesday, January 11, 2017

Wonder Wednesday: Daily Wonder App for iPhone and Android

The Daily Wonder App is a free daily affirmation app that provides a precept for each day of the year celebrating goodness and strength. Based on the book 365 Days of Wonder by #1 New York Times bestselling author R. J. Palacio, there’s something for everyone here—drawn from popular songs, inscriptions on Egyptian tombstones, fortune cookies, and words of wisdom from such noteworthy people as Anne Frank, Martin Luther King Jr., Confucius, Mother Teresa, and Mahatma Gandhi, as well as everyday kids. 

The Daily Wonder App also makes it easy to share your favorite quotes with friends and family on Facebook, Instagram, Twitter, Pinterest, and Tumblr.

Special Features
   • Daily quotes (with access to previous day and next day) 
   • Short biography of the attributed 
   • Social sharing 
   • Calendar view 
   • Educational resources for Wonder 
   • Excerpts of books by #1 New York Times bestselling author R. J. Palacio 

Use the hashtag #choosekind when you post. Allow notifications and you will receive the ability to unlock additional quotes throughout the year. Other surprises may come your way, too. 

Thursday, January 5, 2017

Thankful Thursday: Volunteer Hero, Christian Scalise!

Volunteer Hero: Christian Scalise, Country Stars Central

1.     Where are you from? Chicago area.

2.    Tell me a little bit about you (1-3 sentence bio). I am the founder/CEO of Country Stars Central and Showbiz Deluxe. I love photography, travel, music, cooking, and spending time with family and friends.

3.     When did you first start Country Stars Central? I founded CSC in 2007. My first interview was with Pam Tillis and Gospel legend, the late Dottie Rambo - she has had her songs recorded by Whitney Houston and many other popular artists.

4.    What inspired you to want to do this photo series? It all began with the September Craniofacial Acceptance Month poster. The very first person to pose was Joan Rivers in July of 2014, unfortunately she passed away shortly after. I wanted to find a way to raise awareness for CCA. Through the various meetings I’ve had with countless celebrities, they have been kind enough to pose with the CCA poster. I hope it will help benefit CCA in a positive and impactful way!

5.     When did this hobby turn into a passion? I’ve always loved music and being creative. It really has always been a passion of mine since I was in my early teens. I have always been very inquisitive!   

6.    What’s your process like? What do you say to convince the artist to pose with the poster? I am a firm believer of divine intervention. I always pray about everything I do beforehand. I make every effort to kindly ask the artists I’ve either interviewed, or met to take a pic with the CCA poster. I give them a little background info on CCA and so far, no one has refused! I plan to have many more awesome pics with the CCA poster in 2017…

7.     Who are some of your favorite artists? Loretta Lynn, Céline Dion, Coldplay, Lee Ann Womack, George Jones, Stevie Nicks, and of course Cher.

8.     Do you feel like you have a special connection with any of them? Yes, I would say with Loretta Lynn, I have been privileged to get to know her and her family over the years. I met Loretta for the first time in October 2007, have interviewed her twice and have spent many great moments with her since. She’s very special to me and I am blessed to know her.  

9.    What’s your favorite photo? Okay, other than the Cher one… ;) Definitely Joan Rivers- but obviously I am so grateful for every star who has been gracious enough to pose with the poster. There’s an entire story behind the Joan Rivers meeting… she was SO genuinely interested in getting involved. Sadly, she passed away that September. Out of all the celebrities I’ve met, Joan Rivers was by far the most willing to get on board with the cause. FYI- Please visit our CCA album to see all the celebs who have taken pics with the poster here:

10. What inspires you? Being able to share my talent with others. I love writing, interviewing artists and being creative. The children of CCA have inspired me to want to continue to raise awareness for a wonderful cause!

11. What other hobbies do you have? I have taken a newfound interest in painting, which I started doing in 2014! I painted a flower for Loretta Lynn and most recently presented a painting to Céline Dion in memory of her husband, Rene, this past June.  You can see these paintings and all my other artwork here:

12. What does a day in your life look like? At the moment, I am currently pursuing a degree in communication which has taken up every waking moment of my life…ha ha! In addition to working, and maintaining both websites and our social media sites.

13. What does kindness mean to you? Being able to make a positive difference in the lives of the other people that I meet. We are all here for a reason and a purpose.

14. What’s your motto? Seize the day! Never take no for answer, keep the faith and never lose hope!

15. Why did you decide to help out CCA? (We’re so grateful!) It all goes back to a Midwest (Wisconsin) connection with my buddies Jill Patterson and her son, Robbie. Initially our websites ran advertisements for CCA in an effort to help raise awareness, and funds during Craniofacial Acceptance Month. I have been blessed to meet some of the younger CCA kids, which only doubled my desire to spread the word about CCA. The rest is history… It really is a small world!

16. Five things on your list of things to do before you die: I don’t want to think about that yet. I trust that the Lord has a lot more for me to do before I leave this world. I hope to continue to spread the message about CCA in the years to come. I would LOVE to have Céline Dion be the next celebrity to take a photo with the CCA poster! God bless you all. Thank you for taking the time to speak with me! PLEASE be sure to LIKE us on Facebook too! and

Wednesday, January 4, 2017

Wonder Wednesday: Massachusetts Community Reads 'Wonder'

The Cohen Hillel Academy in Marblehead, Massachusetts 'Chose Kind' by reading R.J. Palacio's Wonder. The school opened up their first Community Book Read to all residents of Marblehead. The school hosted an opportunity for both the Cohen Hillel Academy, and the community at large, to discuss the book with a professional psychologist, an educator, and the head of the academy, Amy Gold. 

Thanks to forward-thinking educators like those at the Cohen Hillel Academy, more and more students are exposed to Palacio's protagonist, August Pullman, each day. The book shows how bullying effects a family and others, including, siblings, students, teachers, and bystanders. Schools across the country are embracing this tale of resilience and acceptance in the face of adversity. 

Spread the word about Wonder at your school. Read the book. Then host an event like the people of Marblehead did. Go to the Children's Craniofacial Association webstore to find everything you need to introduce the book to your community. Come together to build a better world one page at a time.