Tuesday, August 28, 2018

Shop for CCA, Add The IGive Button Today

Help Childrens Craniofacial Association with free donations!

Shop online with iGive.com. Right now, iGive is giving out bonus donations! New members who join by 9/15 can get an extra $3 donation for Childrens Craniofacial Association. The stores make this possible because they want you to like them and shop till you drop. There's over 1,900 socially-responsible stores helping to make donations happen.

I hope you'll give it a try. To learn more or sign up now, use this link: https://www.iGive.com/ymVqd

Shop Today!

Install the IGive browser by following this three, easy steps!

Shopping is easy. When you go to one of your favorite retailers that is a member of IGive universe, the button you installed on your browser will pop up, prompting you to click it, and begin shopping on for all your favorite goodies!

Friday, August 17, 2018

Help CCA Raise Funds During North Texas Giving Day on September 20, 2018

SAVE the date for #NTXGivingDay This year please donate to help us raise money during North Texas Giving Day. The largest state also has the largest heart. Hundreds of organizations located in Texas participate in this day to promote charitable giving. This year we celebrate on September 20, 2018. Set a reminder on your calendar to go to this page to donate on 9/20. 


2018 Craniofacial Awareness Picnics

 Here is the current list of our 2018 Craniofacial Awareness Picnics. 

Sunday, September 16th
The Quinonez’s Home
16077 Chella Dr.
Hacienda Heights, CA  91745
This will be a Potluck Picnic. Please sign up below.
RSVP by September 8th. Dorina Watkins, [email protected] or Courtney Vysocky, [email protected]

Saturday, September 15th
Michigan Craniofacial Awareness Picnic
Ben Celani Pavilion at Bicentenial Park
35400 Seven Mile Rd.
Livonia, MI 48152
Magician will be performing around 2:30.
RSVP, Kellie Dowd, [email protected]
Below is a link to the event's Facebook page

Saturday, August 25th
The Merrill's Home
16 Gallant Fox Rd.
Tinton Falls, NJ 07724
Please join us for a pool party and an afternoon of fun! Food and drinks will be provided. Please bring your bathing suits, towels and a dessert.
RSVP by August 17th to Gary and Nancy Merrill, [email protected]

Saturday, September 22nd
Christmas in September at Santa's Hideaway Hollow
15400 Bundysburg Rd.
Middlefield, OH 44062
Bring your family and come visit Santa's Elves, Reindeer and village of shops, fish at Reindeer Lake, listen to a story and Christmas music, participate in a sing-a-long and more! We will have a cookout lunch at NOON.
A wheelchair accessible trolley and golf carts are available to transport you from the Parking area to the North Pole, and also available during your visit to help you and your family get around the property.
We look forward to seeing you and Merry Christmas!
Questions? Contact Elf Valerie [email protected]

Saturday, September 15th
465 Scott Ridge Rd, Harmony, PA 16037-8833
Please visit this event page for additional details.

September 8, 11 AM-1 PM, TEXAS (DFW) PICNIC
Sandy Lake Amusement Park
1800 Sandy Lake Road
Carrollton, TX 75006
BBQ Lunch will be provided as well as a day of FUN with a DJ, games and more!
RSVP by August 31st
[email protected]
Toll-free: 800.535.3643
Dallas area: 214.570.9099

Thursday, August 16, 2018

Fueling Your Body For Post Surgical Recovery

I am always looking for innovative ways to keep my food intake in check. I eat little processed food, or sugar. I mostly consider myself a paleo with a dash of grains. This is a choice I made with some of my doctors because they know eating good fats like avocado, olive oil, and coconut oil with proteins and vegetables can decrease the amount of time it takes for my body to recover from surgery. I'm am far from perfect at this way of life. Still, I want my body to be running as optimally as possible, thus a low inflammatory lifestyle is required. 

But how do you do this when you are on a post-surgical liquid or soft food diet? Most recommended foods are overcooked pastas, ice cream, pudding, applesauce, Ensure, and foods that are filled with sugar. Yuck! Thankfully there are more options out in the forms of protein powder that are plant-based and animal-based protein. You can find those at Whole Foods or any natural health food store. Your pharmacies may carry them in the vitamin aisle. 

Additionally, our friends at Real Food Blends make a solid, great product specifically made for the people that are fed through a tube. 

Another option that my friend and cousin told me about in advance of my upcoming surgeries is Splendid Spoon. This is a meal kit, delivery service website that provides you with smoothies and soups made from natural, nutrient-dense quality ingredients. I plan on trying Splendid Spoon to let everyone know how the service and food is. 

This post is not an advertisement for either of these brands. It is only an endorsement for all of us in this community to eat well during times when nutrients and eating whole foods ought to be a high priority: while we are healing from surgery. 

What are ways that you have used to fuel your body after surgery or in your day-to-day life with a feeding tube or liquid diet? Recipes are very welcome. Please leave your responses in the comments, so I can follow up on them in a future blog post. 

Sunday, August 12, 2018

Thank You Brooklyn for Raising Over $17,000 for CCA!

Thank you to Angela, Brent, and "WonderKid" Brooklyn Wojtyniak for hosting their first golf tournament at Fox Creek Golf Course in Livonia, Michigan on August 5th. The Wojtyniak's raised $17,054. Two hundred people participated during the day-long event which included 18 holes of golf, prizes for the longest drives and other acts of excellence on the course. The Wojtyniaks would like to thank John MacFarland of MacFarland and Company Home Sales for their generous donation of many prizes for the golf competition. Each hole was sponsored by a company or individual yielding a $100 donation per hole. CCA and the Wojtyniaks are very grateful for those that played golf, sponsored hole signs, and contributed raffle items. 

After the action on the course, everyone gathered for lunch and raffle prizes at the Fox Creek clubhouse. While lunch was delicious, it was the raffle items that drew the most interest by all those in attendance. Angela, Brooklyn's Mom, said, "We had a raffle (approximately 60 raffle items) and a silent auction (25 items) including a Shinola watch, Star Wars Millennium Falcon LEGO set, VIP wine tour at Chateau Chantal Winery in Traverse City, MI just to name a few."

Deb Mato commented on the actives and flow of the day by saying, "We all had a great time with such kind and caring people. The golf, silent auctions, raffle prizes, and delicious food made it a great event! We were happy to support such a worthwhile cause. The supportive “Brooklyn family” is always growing in kindness and love."

The Newton family who participated in the tournament had some kind words for Brooklyn and the Wojtyniak. This bit of feedback truly warms the heart, showing us how Brooklyn was truly at the center of the planning, programming, and spirit of the event. The Newtons say, "It was a B kind-of day; everyone chose kindness. And because of B, we choose kind everyday; for that choice makes us better people. So does loving her. She lives through others like others live through her. Lucky are we to be in her wake, to see Ang’s imagination and Brent’s determination make her into the B she is today, and the one she’ll continue to grow into every tomorrow. August 5th, 2018 was another reminder of how beautiful life can be through the eyes of a child full of wonder."

Thank you again, Brooklyn for spreading love in the best possible ways: to help others in need! Congrats on your successful event. We hope you continue to contribute to CCA with the help of your generous family and friends. 

Thursday, August 9, 2018

Adult Spotlight: Tyler Nienas

“Is Tyler okay?" my teacher asked. "He looks like he got punched.”

Those words from my fourth-grade teacher to my Mom changed my life forever. It was because of her concern that my mother scheduled a doctor’s appointment which led to a diagnosis of Fibrosis Dysplasia on the left side of my face. At ten years old I didn’t really care or know of the impact this diagnosis would have on my life. 

There have been the obvious downs of living with a rare craniofacial disease. The teasing throughout
middle school was brutal. I would constantly be asked, "what happened to my face?" "Why is your face so puffy?" I would be called ugly, deformed, gross, and burn victim just to name a few choice words. While these actions and words carved a huge blow to my self-esteem, I thought there would be some solace in my first surgery, which I had right as I was starting high school. I thought finally my face will be “normal” now. It was December 20, 2006. The surgery was performed in St. Louis. I was fourteen. I remember waking up in tremendous pain and disorientation. I have had over a dozen surgeries since then, some in St. Louis others in Dallas, TX. All these surgeries were related to my Fibrosis Dysplasia.

There have been nights where I have cried myself to sleep because I felt ugly and isolated, like no one else could understand what I've been going through. I became shut off from the world. And to be honest, I have been there and I have hit rock bottom more than once.

However, you cannot let your disease define who you are. Adversity does not define you. You define your direction and purpose in life. I had great support from my friends, therapists and most importantly my family that helped me cope with the struggles of Fibrosis Dysplasia. There are more people in your corner than you realize. It took me a long time to accept my disease and come to grips with it. I became a better person because of it

Now, I am a 26-year-old man living and working in St. Louis, Missouri. I can truly say I am blessed to have this happen to me. It has given a new vigor to my life. It has made me appreciative of what I have. It has taught me that life is meant to be lived. Beauty is skin deep. It is the impact of your actions and how you treat others, no matter their physical appearance, that will ultimately be what people remember about you. It is that attitude and mindset that has made me able to share my story with others. I encourage all of you to share your struggles, your pain, but most importantly your victories because those happen daily. The victories happen when you choose to live your life and look beyond the realm of physical appearance, and into the world of supernatural courage and determination. 

If you are living with a craniofacial disease, whether you are a parent or patient, know that I and everyone here at the CCA is in your corner and rooting for you always!

Tuesday, August 7, 2018

Help Celebrate Craniofacial Awareness Month, Kickoff Dallas Sat., Sept. 8th

Dallas, TX -- Children's Craniofacial Association celebrates its 14th annual Craniofacial Acceptance Month this year and you can be part of the fun. CCA will host a Dallas-area picnic on September 8th. We encourage our families to host awareness events in their home cities spanning across the United States during the month of September. CCA hopes that you will share your stories and spread the word about our courageous kids through your local newspaper, TV, and radio stations.

Many kids with facial differences, empowered by the movie and New York Times-bestselling book, Wonder, eagerly want to share their “real Wonder” stories with the world. You can help them reach the goal by giving them access to your media platform. If your newspaper, television or radio station covered one of our CCA kids’ stories during the premiere of the movie “Wonder” or for last year’s Craniofacial Awareness Month, please consider following up with the family. Here is a list of links to stories that received news coverage last year https://ccakids.org/real-wonder-stories/

The Dallas-area picnic is our kickoff event signaling the beginning of the month-long celebration of
everyone in the craniofacial community. Sandy Lake Amusement park in Carrollton, TX will host the
picnic on Saturday, September 8th from 11AM - 1PM. This year a barbeque lunch will be provided. The event will feature games, a D.J., free amusement rides, and time for families to connect and meet children with craniofacial conditions.

Dallas CAM Picnic 2017
Children’s Craniofacial Association (CCA Kids), a national nonprofit headquartered in Dallas and founded in 1989, worked for over 27 years toward the vision of a world where all people are accepted for who they are, not how they look.

Each year approximately 50,000 children in the United States are born with or develop some form of
facial difference (previously called disfigurements). In many cases, reconstructive surgeons can correct these problems early—often while the children are still infants. In other cases, however, reconstruction is not so easy or even possible. To assist these families, CCA offers programs and services including Patient Financial Assistance, the Annual Family Retreat & Educational Symposium, and kindness education and bullying prevention programs in middle schools across the country.

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. Learn more about at http://www.ccakids.org.

Wednesday, August 1, 2018

From the Bench with Francis: An Interview with Peter Mossey


From the Bench with Francis
A regular column on craniofacial news and technology by Dr. Francis Smith

Dr. Francis Smith travels all of the world to conduct research on genetics and craniofacial conditions. He speaks to other scholars about his research interests. In this video, Dr. Peter Mossey, Professor of Craniofacial Development and Associate Dean for Internationalization at the University of Dundee in Scotland talks to Francis about his research. Learn more about Professor Mossey here at his website.