Tuesday, May 29, 2018

#WonderWednesday: Macey Atkins Spreads Kindness in Louisiana

Macey Atkins spoke about Wonder and her life with a facial difference in front of a classroom full of students at Covenant Christian Academy in Houma, Louisiana. Here are some photos from her visit, presentation, and making new friends in Louisiana. Keep spreading kindness, Macey. Great work!  

Macey, and her mother Stacey Atkins, were also instrumental in donating toward our Tony Stewart Foundation Tony's Kids Can Campaign, helping CCA raise $10,000 in one week thanks to anonymous matching donation.

Stacey and Macey have had a quite the month of May, living the mission and supporting CCA. Thank you so much for sharing your story and helping our kids! 

Friday, May 25, 2018

Family Spotlight: Araceli Kimberlin

By Araceli Kimberlin

I was born and raised in Dallas, Texas. I love my city and couldn’t imagine living anywhere else. I actually live in a house three houses down from my childhood home, where my parents still live. I always say I’m a 1,000% city girl. However most of my extended family lives in New Mexico, which is where my parents met and spent a good portion of their lives. When my parents decided to move to Dallas before I was born, I don’t think they realized how significant that move would be to the health and well-being of their first daughter. They ended up moving 10 minutes from one of the best hospitals in the world for medical help for kids with facial differences.

Growing up, I knew about CCA and often attended the yearly Christmas parties. But my family and I weren’t really involved in the organization. When we found out that our second son Aaron had Crouzon Syndrome like I did, I wanted his experience to be different. I wanted him to have a community where he could feel accepted and where he could feel like others could relate to him and the issues he was facing. I knew we needed to become involved in CCA. I attended our first CCA picnic last September and met so many wonderful CCA staff members and parents of kids with facial differences. It was amazing. Ever since then I’ve looked for every opportunity to be more involved in this wonderful organization. 

Thankfully, I knew what Aaron would go through because of my personal experiences with Crouzon Syndrome. As a child growing up with facial differences, life was tough. You can’t “hide” or “change” your differences. Many times I felt like no one could relate to me and what I was going through. No one understood what it was like to look different even though I was the same as they were on the inside. However, I never viewed my facial features as a barrier. I decided I was going to live my life as “normal” as possible and wanted to do what every normal kid at that age did. I excelled in school, I was a dancer, I had a ton of friends, and I joined many extra-curricular activities, many of which I held leadership positions. 

Today, my mom and I are unraveling my surgical history after walking through a couple of surgeries with Aaron. I think we estimate that I had about six in my childhood. The first one was when I was nine months and that one was to fix hydrocephalus. My last surgery was at 14, right before my fifteenth birthday or quinceanera. That was hard. I remember taking my quinceanera picture with a slight smile because my jaws were wired shut. I should have probably had another surgery at 18 but after the last surgery at 14 I decided I didn’t want anymore. My parents were amazing in supporting my decision. 

As a child, Crouzon Syndrome was just something I had. I had to go into surgeries for it and it was just a part of my life. Having a child with it opens up a whole new world. All of a sudden I have become a doctor, advocate, nurse, insurance bill specialist, protector and so many other things I wasn’t when our first son was born. I remember sitting in shock when the doctors told me they suspected he had it. I couldn’t believe it. It never crossed my mind that Aaron could be born with it since our first son didn’t have it. I was sad, frustrated, and angry. But then I realized the quality of life he would have. It was going to be amazing, because my life is amazing and still is. I know I’m going to teach him to love his life just like my parents taught me. I’m honored that I get to tell Aaron I’ve walked in his shoes. I know what it feels like to have Crouzon Syndrome and I’m going to be there for him. 

My hope for my children is that they grow up to be confident, strong men of God. I want the story of their lives to give others hope. I want them to find purpose in their trials and use it to inspire and make a difference in the lives of others. 

I absolutely put my hope and trust in Jesus, the one who saved me, accepts me and loves me, facial differences and all. My husband and two boys inspire me to become a better woman, wife and mother. I want to grow everyday and be a better person today than I was the day before for them. I also live my life based on Philippians 4:8 in the Bible. I find joy in life, even in the struggles. There is ALWAYS something to be joyful about. 

Part of living out that joy is by spreading kindness. Kindness to me means taking a moment to put myself in the shoes of someone else. If
a person was mean or rude to me I always give them the benefit of the doubt. Maybe they just received some devastating news. Maybe they lost someone dear to them. If someone is happy I want to celebrate with them. One day I will be celebrating and I would love for them to be happy for me. Kindness is a way of life, not just a fleeting feeling. And with everything in me I believe the more kindness I pass out, the more kindness I will receive.

Wednesday, May 23, 2018

Travel Tips for Salt Lake City: Sights, Bites, and More

By Kara Jackman

Little America Hotel Pool, Salt Lake City, UT

I love to travel! One of my favorite websites for travel is Lonely Planet. (I have mannnny, but this is where I love to start!) There is always a tidbit of information that I did not know that I learn on this site. It also points me in the direction of other great travel resources for my destination du jour.

Well, we are all headed to Salt Lake City next month, so I started to take a look at what's popping in the capital of Utah. Our friend, Jenna, told me that people with disabilities receive free access to the National Parks. I had to double check it, because I just could not believe it. It was too good to be true! Turns out Jenna was right. Lonely Planet confirmed it on this page.  It also provides a comprehensive list for the Southwest and West of other places that are friendly to those with disabilities, wheelchair, and other assistive devices. How Cool!!!

Arches National Park

I hope these resources are helpful for those that may be driving to retreat. Arches National Park, Bruce Canyon, and parts of Zion National Park are all about 3 or more hours away from Salt Lake City. You can learn more about the Utah parks .

In order to see the best sites and enjoy the best eats, I also love to check out the hotel website for suggestions, too. As you know, we will be staying at the Little America Hotel. Their website has a Local Activities menu  where they suggest places to eat, play, and shop. The best advice I ever got about travelling is to talk to the concierge. They will be able to find exactly the kind of place you may be looking for whether it be the local diner for breakfast and a new gastropub for dinner. They will also know where the closest pharmacy, grocery store, and big box stores are in case you or your kids forgot something important.

Pro tip...Always ask where the locals go, there is sure to be good food and good times wherever they go. Additionally, here are some great restaurants and shops that my favorite Boston Globe travel writers mentioned in an article about Salt Lake City. A couple restaurant suggestions are The Copper Onion and Trio Downtown. A fun place to shop looks like Unhinged Boutique. Art lovers should check out the Art Salt Lake website. (Learn more about other Salt Lake City hotspots in the link at the bottom of the article.)

Finally to uncover even more possibilities, I plan on going to my local library to either borrow a travel book for the area, or download one to my smartphone or Kindle. It's a nice idea because you will have a map of the city before you arrive. You can plan you adventures ahead of time based on your interests. I love travel books. They are THE one item I look for in used book stores for their beautiful photography and information.

Now you are ready for Salt Lake City! See you all soon!

*More suggestions abound in this Boston Globe article

Friday, May 18, 2018

Apert Syndrome Study Participants Needed

Dr. Drorit Gaines in California is conducting research on the connection between ADHD, Autism and sensory disorders among children born with Apert Syndrome. Please read the flyer below and contact Jackie Shaib, Research Coordinator, if you would like to participate in this significant study that could improve the quality of life for your son or daughter. 

Wednesday, May 16, 2018

May 31st Deadlines for Annual Retreat and Educational Symposium

REMINDER: Please make sure you send Annie Reeves ([email protected]) the following information by May 31st. 
1. The symposium sessions you and your family members will be attending. (If you will be using childcare, please email your completed form directly to the company, not me, by May 31st.)
2. If you will be needing a Veggie Burger instead of a Hot Dog during Saturday's provided lunch, please email me.
3. If you or anyone from your family won't be eating one of the provided meals, I need to know so I can remove you from my head count.

Thank you all for being so awesome! See you next month!

Wednesday, May 9, 2018

Camp Cosmos New Location & Registration Information

Our friends at ConnectMed are enthused about the overwhelmingly positive response they received about Camp Cosmos on Sunday, July 22nd. Now ready for a larger crowd, they changed the location to Camp Cahito at San Diego's Balboa Park. Lunch will be provided, too. 

You can now register for this incredible opportunity open to kids that live in the Southern California and Southwestern states! Check out the updated flyer below. 

For questions and more contact Dana at [email protected]

Register Today!

Monday, May 7, 2018

Tony's Kids Can, Through May 11th Raise $5,000, Get $5,000 In Matched Donations!

Children's Craniofacial Association is a family. We want every member of our family to do their part to raise funds for the Tony Stewart Foundation's newest campaign "Tony's Kids Can." If we raise $5,000 by Friday, May 11th, then our donations will be matched, dollar for dollar. This would result in  $10,000 being raised for CCA. For many years, Tony Stewart Foundation helped CCA kids through grants and other financial support. Today they continue their work for us through the Tony's Kids Can. This opportunity is unique due to the one week, double impact challenge.  In order to be successful, everyone must come together and work as a team to advance CCA to the finish line on Friday, May 11th for the matching $5,000. 

The how is up to you. The why is for the kids. 

There are two ways to donate. You can donate to the already existing, online fundraisers, or create your own page.You can raise money by holding a yard sale, lemonade stand, dance-a-thon, road race, or just by spreading the word on social media. Here are more suggestions from the Tony Stewart's Foundation website. Whatever you do, do it with all your heart...because, like Tony says, "it's all about heart!"

Here is the press release from the Tony Stewart Foundation that explain more about the fundraising process, what organizations Stewart chose to benefit, and plans for future fundraising efforts that will begin in Fall 2018. 

-Kara J. 

Teamwork to Fund Children’s Charities Initiated by Tony Stewart’s Foundation (Indianapolis, IN / May 1, 2018) – Tony Stewart, 3-time NASCAR Series Champion is a self-proclaimed “softie” for helping children and animals through his named foundation. Tony personally raises a lot of funds for his foundation’s grant program that monetarily awards outstanding organizations providing programs and services helping children with critical illness or physical disabilities as well as animals at-risk.

Kicking off May 2 and running for the next 90 days, Stewart has issued a challenge to race enthusiasts along with everyone who cares deeply about children’s health and wellness. Stewart remarked, “ Over the years I’ve met so many of these kids and have continued to be struck by their can-do attitude. I decided it was time to show these great kids that others are willing to step in and show our ‘will-do’ support by raising funds among family, friends, neighbors and colleagues.”

Tony’s Kids Can, an online peer-to-peer giving program, is designed to encourage creative, thoughtful and fun fundraising practices for donors, resulting in contributions to the foundation and to its grant partners. Financial contributors to the campaign can make an individual donation, but are encouraged to involve others in their fundraising paired with various activities and promotions. “We want to turn fundraising into FUNdraising,” says Stewart.

“The goal of the program is to mobilize groups of kind-hearted people to raise funds in creative ways while having fun and creating community,” says Pam Boas, Stewart’s mom and treasurer of the board of directors. We envision backyard BBQs and wine tastings alongside children’s movie night and lemonade stands among what’s certain to be wildly creative ways to have fun while raising money for the grant program.”

More than half of the current foundation’s grant partners serving children have elected to participate in Tony’s Kids Can. Next, starting early fall, a second campaign will feature the grant partners provided services and rescue for at-risk or endangered animals.

Stewart is seeking teammates of all ages to join his Tony’s Kids Can effort. Kids are encouraged to participate to not only help other kids but to learn a bit about philanthropy in the process. Stewart’s goal is to raise at least $60,000 that will directly benefit these children’s charities through the foundation’s grant program.

Together we will Accelerate Change for children. These kids have a can-do attitude and spirit. Do you? Please visit the Tony’s Kids Can campaign to see how you can join the team - https://tonystewartfoundation.blackbaud-sites.com.

Sunday, May 6, 2018

Why You Should Write & Some Writing Prompts From The Mighty

I am sure you are wondering...why, Kara, do you share these writing prompts every month? What is is with your obsession with these prompts? Where are the fun stories and information about fundraisers? Well, let me explain. I like to share these writing prompts from The Mighty because I think it is a nice way to frame or begin a writing practice AND to do some self care.

Writing helps me organize and understand my emotional, physical, and mental worlds. Many times people do not know where to start. These prompts provide that starting point. You do not need to post what you write on the internet. Heck, you do not need to even write sentences. You can always pick up a scrap of paper, open your phone to the voice memo or notes app, or pick up a napkin and just start pouring your words and thoughts out of your mind.  The act of writing is the act of perspective making. You are reorienting yourself to your problems, moving them from mind to pen, computer, or smartphone.  You can analyze them if you wish, or just leave them aside, safe, locked away in your phone or in a folder, or notebook. Now you  may be able to be able to sleep more soundly, or figure out patterns that you did not realize you were repeating. So much can be learned. Ultimately, those sometimes toxic thoughts are out of our bodies where they may be causing additional suffering. 

It is time for some Spring cleaning! Get to work! If something worth posting to The Mighty comes out of this exercise...Great! If not, do not despair. You are courageous in just taking the time (5, 10 minutes or more) to get those thoughts and emotions out of you and into perspective. You have chosen to move toward healing and positive thinking. Your body will thank you!

-Kara J. 

Without further ado...here are May's writing prompts from our friends at The Mighty 

1. Sometimes, even during life’s hardest moments, humor can make it all seem a little easier. Describe a moment related to your condition that turned out to be funny (to you, at least). How did you find the humor in this situation, and why is it a memory that’s stuck with you?
2. May is Mental Health Month, and we’re using it to answer the question: What do I need? It’s deceptively hard to answer. Sometimes, you don’t even realize what you need until someone else gives it to you — whether in the form of a gift, a helping hand or a simple text. Tell us about a time someone gave you something you didn’t even realize you needed. Why did it help you?
3. A major part of having a diagnosis or caring for someone with one is often feeling isolated in your circumstances or feelings. If you relate, describe a moment you felt alone in a challenge. How did you deal with this? How did your loved ones respond — or, how do you wish they had responded? What advice would you give to someone looking to help a loved one who shares your condition?
4. Have you ever heard a song lyric that made you feel understood as you go through your health journey? Share the lyrics, and if you can, describe the moment you first heard them. Why do they resonate with you?
5. Describe a symptom of your or a loved one’s condition that at first you (or more likely your doctor) blew off as “no big deal” but later realized was a big deal — or at least something you should be treating. How did you navigate this diagnostic journey? Did loved ones and medical professionals believe you?

Tuesday, May 1, 2018

Delaney Cunha Goes Fishing With the Fishing Philanthropist, Chasten Whitfield

By Kara Jackman

In March, North Florida native, Delaney Cunha, and her Mom and CCA Board Member, Kelly, enjoyed a day on the high seas learning how to fish with Chasten Whitfield. Chasten, (AKA "Chaz") has always loved fishing and philanthropy. She has been able to combine her two passion through her Chastenation, where she introduces children that face medical challenges to the sport of fishing.

Chasten's charitable life began at a young age, raising money at the age of five for St. Jude's Children's Research Hospital. Each year from kindergarten to fifth grade she held a garage sale, in those six years she raised $6,000 for St. Judes.

In a cruel twist of fate, she says, her brother was diagnosed with "a rare tumor in his hand, so it was my first lesson in things coming full circle." As she was managing life with her sick brother, she entered junior high where she was bullied for "being the only girl who fished," 

Chasten says, "All my friends were doing all-star cheer and I wasn't the best cheer leader, so my mom talked me into a fishing tournament." She won first place in that competition and the rest is history.

The money she won went right back to kids in need, this time to for camp for kids that suffered bad burns. Chasten also spoke at schools about bullying. This was particularly remarkable since she started this work in her sophomore year of high school.

Then in 2016, her two worlds of doing good and fishing collided again. Chasten recounts the story that started the work that she is currently doing, "I did a fish camp off a pier [during the] summer of 2016 and met a little boy in a wheelchair who had never been on a boat or fished. I was determined to help him catch a fish and when he did, he did donuts in his wheelchair screaming I caught a fish!!! That feeling of joy, the self esteem that little boy just gained was unbelievable." 

Right there Chasten knew she had found her calling. The boy and Chasten became friends. She took him on her boat to go fishing. He was the first in over 47 kids she would introduce to the sport of fishing. Chasten sells T-shirts on her website, Chastenation, to fund these trips out on the water for kids with medical challenges. Yellowfin boats helped build a boat hearty enough to hold a wheelchair and other meidcal devices. There are other small businesses that sponsor her work or volunteer their time, making these fishing expeditions possible. 

Chasten wants the experience with the kids to be "a day for them to forget all their troubles. A day where they don't have to fight what they normally fight, they just have to fight for a fish...that's it." 

And fight for a fish was exactly what Delaney Cunha, born with Pfeiffer's Syndrome, did on a bright, beautiful day in the middle of March 2018. Delaney and a camera crew went out on the Yellowfin boat to catch some fish.

Delaney came to Chasten's attention after winning a Tampa-area parenting magazine cover contest. Thanks to all Delaney's many friends at CCA, she won, which got the attention of Chasten also a Tampa native. Watch the videos of Delaney's big day and hear more about CCA from Mom, Kelly.

Learn more about Chasten Whitfield on Facebook and follow her fishing adventures on Instagram. You can purchase T-Shirts and other merchandise to support future fishing trips on her website

If you live in the Florida area, feel free to contact Chasten through one of her social media accounts.  She is super friendly!