Wednesday, August 21, 2019

#ThankfulThursday: Fan-Built Optimus Prime Raises $700 at Ohio Super Nationals




Joe Fiduccia built his own Optimus Prime. Invited by the Seitz family, he brought it to this year's Hot Rod Super Nationals to showcase his creation and raise funds for CCA. He had a successful outing in Ohio, raising and donating $700 to CCA! 




Joe owns JAR Entertainment, LLC. He built and owns the only fan-built replica of Optimus Prime and KITT from another iconic 1980s TV show, Knight Rider. Automobiles of the 1980s are his passion, sharing them with the public allows him to put smiles on faces and give back to nonprofits around the country. 

You can invite Optimus Prime to your event. Contact Joe about hosting him and the truck that is more than meets the eye by contacting him at his website, http://www.optimusishere.com


Thank you for your donation, Joe. You truly are more than meets the eye!



Tuesday, August 20, 2019

Dallas Families Join Us For Links of Love At TopGolf Park Lane on Sept. 12th



Register for our revamped Links of Love golf outing on Thursday, September 12th from 5PM-8PM.  Now at Top Golf! 


Register today at bit.ly/ccalinks 

Monday, August 19, 2019

Pennsylvania Kids Give Back with Lemonade Stand



Madisyn Bowers, her brother, and some friends held a profitable lemonade stand for CCA in Harmony, Pennsylvania! These are some of our favorite fundraisers because they are small acts of kindness that spread the word about our organization.  This one was are kid-run and customer approved! One gallon of lemonade yielded $19 for our kids. At fifty cents a cup that is a LOT of lemonade. Thank you so much Madisyn and family for your generosity. We hope you helped everyone in the neighborhood cool off during this hot summer. 


Sunday, August 18, 2019

How To Turn Facebook YELLOW for #CAM2019



By Joe Brooks 



Joe Brooks knows that a picture is worth a thousand words. In this post, he shows us how to turn Facebook yellow to celebrate Craniofacial Awareness Month (#CAM2019). Thank you, Joe for your great instructions on how to update your Facebook page images. Everyone should do the same on Twitter and Instagram, too. On Twitter, be sure to tag your CAM posts with this year's hashtag, #CAM2019. Every word and image makes a big difference. Take it away, Joe!

September is Craniofacial Acceptance Month. During that month, I, along with my friends, aim to raise awareness and let the general public know that people with craniofacial syndromes are, well…people. Just like them. We all have likes and dislikes and we can be goofy and all that good stuff. Children’s Craniofacial Association is a nonprofit headquartered in Dallas that serves people and families affected by craniofacial differences. 


Every September, we encourage as many people as possible to change their Facebook profile pictures and/or cover photos to the CAM graphics. Since I know that there are people that want to do this but don’t know how to use Facebook very well, or are not sure how to change their pictures, I have decided to write up some instructions to explain how it’s done. Feel free to pass it on to anyone who needs help.

Changing Your Profile Picture
Part 1 (If you already used a picture before, you can skip to part 2 and 3)

For Profile picture, you will want to put your mouse over your current profile picture, then a bar comes up in the square that says: “Update Profile Picture.”

Click that and a menu will pop up. Find the “Upload Photo” option at the top, and then upload it from your computer. You can download the CAM graphic from this blog post below. If that doesn’t work, download from the CCA website, or from one of your Facebook friends who already has it.




How to download and save: Just right click the image and “save image as” to save to your computer; it will most likely save to your "Downloads" folder on your computer, unless you select another folder (like your Desktop).


Part 2 
 
If you already made the Children's Craniofacial Association logo your profile pic in the past, you do NOT need to re-upload it. All you need to do is select “Choose from Photos” from that same menu that pops up when you hover over your current profile picture. Then, you have the option to scroll through your photos.

Find that yellow graphic that you used before. Facebook will ask you if you want to re-use that picture….lol….just click "YES" and there you go!

Part 3 - For cover photos the process is similar.
There is a faint camera icon on the top left corner of your current cover photo. Click on it and a similar menu will appear, follow the same profile picture steps for your cover photo. You can use these images for cover photos. 





So there you have it. Now you too can help spread the Acceptance message with us all month.

And don't forget to apply this year's new hashtag #CAM2019 to your social media posts.


Thursday, August 8, 2019

Help Now: Positive Research Outcomes Help Children With Craniofacial Conditions!



Many researchers across the country are conducting studies to better understand craniofacial conditions. You can help improve the future of medical care for those born with facial differences by sharing your personal experiences. 
There are countless examples of research papers that benefited from participants like YOU! Recently, we covered research that was done at Seattle's Children's Hospital and the University of Washington. Learn more about the positive outcomes you made possible in this CCA Kids Blog post.
You can help provide insight for current studies to pave the way for major breakthroughs in treatment AND to assist medical providers move toward a more patient-centered care approach.
YOUR willingness to participate is one vital way to give back.


CURRENT OPPORTUNITIES
Review the links below to see if there is a study that you are eligible for and can contribute your family or personal experience to help brighten the future for those born wth facial differences.

ALL CRANIOFACIAL CONDITIONS
Directed at CCA Retreat Attendees and regional Utah families
At the University of Utah and Primary Children's Hospital, we are trying to better understand the impact craniofacial abnormalities have on children and families.  This study will help us both understand and measure the many ways this disorder has affected your child and your family. 
If your child has a craniofacial abnormality (CFA), you may qualify to participate in a study.  We are working with families to create a quality of life (QOL) questionnaire.  The CFA quality of life questionnaire will help providers understand how CFA impacts quality of life of families and those who care for young children with CFA. The goal is to give providers better understanding of the impact the disorder has on families’ lives, while also providing a framework for discussing and solving the problems families face.  We hope the development of this instrument will help other families impacted by CFA .
We will be conducting some focus groups during the upcoming CCA Retreat in Salt Lake. We hope you will share your family’s experiences with CFA with us, so that it can be reflected in the instrument we develop.  The survey here will allow you to sign up for a focus group. It also asks for a limited amount of information about you and your child, to allow us to plan the focus groups and analyze the transcripts. All personal information is very carefully protected.
If you have additional questions, you can email our study team at Cleft-Research@hsc.utah.edu. The lead researcher and doctor for this study is Jonathan Skirko, MD
Families and individuals with Pfeiffer Syndrome, Apert Syndrome, Crouzon Syndrome, and Muenke Syndrome are invited to inquire about the reserch being conducted by Dr. Jabs and Carolina Sommer with the Born A Hero, an organization empowering kids born with Pfeiffer Syndrome. 

Genome Alliance 
Genome Alliance hopes to learn more about your understanding of genetic testing and family medical history with their one-minute survey. 
APERT SYNDROME
Dr. Drorit Gaines in California is conducting research on the connection between ADHD, Autism and sensory disorders among children born with Apert syndrome. All that is required for this study is an Apert Syndrome diagnosis, copies of your medical records, and the completion of a questionnaire. Click the link above for more information. 

CLEFT LIP AND PALATE 


Researchers across three hospitals and universities are studying surgical outcomes of cleft lip patients. The Seattle Children's Hospital, University of Illinois - Chicago (UIC), Shriners Hospitals for Children (Chicago) and the University of Washington have teamed up to learn from patient and their parents about their impressions on change of their infants face after surgical interventions. Study coordinators, Laura Steukle and Solange Mecham describe the process of the study and how you can help in the description below, 

Our study team has spent the last two years interviewing parents and craniofacial providers to create a tool to evaluate interventions and treatments that infants with a cleft lip with or without a cleft palate are going through. Now that this tool has been developed, we are looking to validate the questionnaire. To do this, we are asking parents of young babies and young children with a diagnosis of cleft lip with or without cleft palate to complete the iCOO questionnaire a few days in a row at the following times 1) before surgery 2) 2 days after lip surgery and 3) 2 months after lip surgery.  As our way of saying thank you, we are giving parents $5 a day each day they complete the iCOO with a bonus $25 for each complete series, for a total of up to $160 for their time and effort. We are inviting up to two caregivers in the home to participate. Our goal is that this tool will help clinicians and researchers better understand how these interventions are affecting the whole health and well-being of infants and young children with the hope that this understanding will improve future cleft care.

GOLDENHAR SYNDROME

In the past two years, we at Baylor College of Medicine and Texas Children's Hospital have begun a genetic research program to look for the genetic cause(s) of Goldenhar Syndrome (also variously called Hemifacial Microsomia and Facio-Auriculo-Vertebral Spectrum). You may be aware that very little is known about the genetic explanation for these rare disorders, despite their variable effects on the eye, the ear, the face, the limbs and skeleton, and occasionally the kidney, among others. Also, these conditions vary widely from one family to another, so we expect that there is more than one genetic explanation for the same "diagnosis”, thus making the task of unraveling the true explanation(s) in any one family considerably more challenging! Many families have already had conventional genetic testing, which usually yields almost no useful information.

As part of The Center for Mendelian Genomics at Baylor College of Medicine, I am pursuing the genetic explanation(s) for the Goldenhar Syndrome and related conditions.


Since you as parents have an essential role in caring for, monitoring, and guiding the education of these children and young adults, I would appreciate most sincerely your joining us in this effort. Without your dedication and willingness, we cannot achieve the understanding that both the families and many scientists and physicians have wondered about for decades! There is no cost to any family for the detailed genetic analyses that will be done.


If you are interested in helping your child and in joining this research program, please contact me. Nothing of this scale has ever been done for this spectrum of disorders.

Please call my academic office at (713) 798-3030 or email me at rlewis@bcm.edu. 

If I am not in the office, please leave a voice mail with your name and a phone number for me to return your call. Also, please mention Goldenhar Syndrome or Hemifacial Microsomia in the message. I will call back and explain the details!

Thank you! Our team here is most eager to proceed with this unique and exceptionally important research program!


Richard Alan Lewis, M.D., M.S. Professor, Departments of Molecular and Human Genetics, Ophthalmology, Medicine, and Pediatrics, Baylor College of Medicine and Texas Children's Hospital




UNDIAGNOSED
The overall goal of this project is to connect rare and undiagnosed families directly with genomic researchers to discover all of the genes that cause rare craniofacial diseases, and use this information to increase the rate of rare craniofacial disease diagnosis. 
Participants will complete an online form about their family and childhood onset rare and genetically undiagnosed craniofacial condition. From there, a member of our study team will set up a live video conference with the family to explain this research study and make sure that all of their questions are answered. With permission, we’ll reach out to the patient’s doctors directly to collect a copy of their medical records. Then, we’ll mail a sample collection kit directly to their house. Upon returning the kit to The Broad Institute of MIT and Harvard, samples will be registered in our tracking system and DNA will be processed for exome or genome sequencing. We will then begin analyzing data, comparing it to healthy individuals and identify which mutations in the genome are common, and which are rare and potentially related to their craniofacial condition. If we find results that explain the underlying cause of the rare condition present, we will request a second sample that will be sent to the Partner’s Laboratory for Molecular Medicine (LMM) in Cambridge, MA and will be confirmed in their clinical lab. LMM will provide a clinical report explaining the genetic findings, and these results will be shared with you and your local doctor. Click the link above for more information. 

Wednesday, August 7, 2019

Honk If You Love CCA...Donate Your Old Vehicle Today!






Reduce Your Stress with One Less Vehicle. Donate It to Children’s Craniofacial Association.

CCA Kids provides free and convenient pick-up for all vehicle donations! From cars, trucks, RVs and more—we accept almost any type of vehicle donation that meets the following basic requirements:

1. Vehicle has a clear title.

2. Vehicle is in one piece but does not need to be running.

3. Vehicle is tow truck accessible.

Donating a vehicle is easy and tax-deductible! The proceeds help CCA Kids continue to empower and give hope to individuals and families affected by facial differences.

Simply call 877-570-4222 or submit the secure online donation form at https://careasy.org/nonprofit/childrens-craniofacial-association. Our expert Donor Representatives are here seven days a week and will reach out to you to arrange for your vehicle to be picked up at a time that works for you.

Donate your vehicle today! Our Vehicle Donation Support Team will take you through the process from start to finish.

Saturday, August 3, 2019

30 Stories 30 Faces 30 Years: The Molinas








The Molinas are from sunny Chula Vista, California. In true SoCal fashion, they enjoy time together at the beach, frequent road trips, and bonding at home laughing and telling silly stories. The Molina kids, Isabella (11), Emilio (10), and Max (8) love listening to music, expressing themselves through drawing and instruments like the piano. The boys love using their imagination in creating obstacle courses for their toy cars. Max enjoys taking the lead in engineering intricate raceways. Parents, Pedro and Karla, are forces in their own right, both working hard to help others become their best selves. Pedro works as a Wellness Consultant and Karla is a marriage and family therapist.



Raising Max, born with Treacher Collins syndrome, allows Pedro and Karla to be deeper and more open with others. Once upon a time, Pedro was simply striving for the most comfortable life possible. Now, he and Karla are focused on accepting life as it comes and living authentically. Pedro says of this fresh perspective on life, “It has made me more flexible. I can be rigid in nature and want things my own way without change. I have now embraced change…embraced being different. Instead of constantly being frustrated with not having life ‘the way I thought it should be’ I now accept that although it’s not the way you imagined, there is still beauty present. I used to live my life avoiding conflict, wanting everyone and everything to be ok. Building the most comfortable life I can. This produces a superficial and shallow life. Devoid of deep and meaningful relationships. Consequently, my relationships are deeper, my conversations are more meaningful, and I am not afraid to ‘go there.’ To not only sit with the pain of life within myself and others, but to also reap the joys and wonders that come with having others by your side.”

Karla feels the change, too. She steps up, embracing her new roles of “brave mother, teacher, advocate, and expert,” for all three of her children, but especially Max. Perhaps most telling is the way she advocates for Max. Karla says, “I’ve learned the importance of introducing Max to his peers. I encourage them to ask any questions they want about Max. I set the space and freedom to wonder and ask. And the beauty of this experience is that kids will quickly move on and see Max like any other peer.”


She goes on to say it has even motivated her to advocate for systemic change, too. She continues, “My view of disabilities has become more clear and profound. I see the subtle and blatant injustices that comes with children who look or are different. Before Max, I was not aware of any of this and today as a parent with a son with TCS, I have come to realize that we live in a world that values perfection. This affects both young and old. Many are quick to stare at my son Max and wonder, ‘what is wrong with him?’ Yet, I have come to recognize that too many times they do not realize what they do. This has been the biggest lesson I’ve had to learn and be reminded of over and over again. Therefore, in these moments, I intervene and say something … When I do this, I believe I am teaching Max that he is worthy no matter what and that he matters. I am also teaching [others] to notice themselves and perhaps gain awareness about they their stares, gestures, and perceptions and how hurtful they can be.”


Each and every member of this family has a vital role to play. Siblings Isabella and Emilio are Max’s first friends and playmates. Dad stands by his wife and children today, a more supportive, reassuring, and kind presence. Mom is a seeker, advocate, and expert on all things to ensure Max, Isabella, and Emilio’s success.

CCA is excited to feature the family as part of our 30th Anniversary campaign because we feel we’ve learned so much from them. As all of us know, having a child with a facial difference adds a new dynamic to the family. But we also know that those changes often bring out the very best in people and bond families together even more strongly.


After a few interactions with CCA staffers and friends, it was clear to see the Molinas are pace-setters, and we admire their family. The Molinas are so fun, engaging, and easy to be around. There is a calm that runs through the fabric of their lives. Even in the scorching hot Arizona sun where we conversed about this piece, their cool Southern California attitude set us at ease. We are so glad they’ve joined the CCA family!

Christine Shares Her Story at New Jersey Church

Christine Clinton and Jen Kilmer at Annual Family Retreat
and Educational Symposium 2019 in Scottsdale, AZ

Christine continues to share her story and advocate for kindness across the north east. She mostly speaks to middle schoolers, but this time she spoke in front of the congregation at her church, St. Justin the Martyr Catholic Church. Clearly, she is not afraid to branch out to spread the message of acceptance and kindness to more people.

At St. Justin the Martyr, she spoke about the power of vulnerability. She described how to be vulnerable to the packed church, by saying, "it’s standing there for an extra 90 seconds or even 90 minutes to allow someone to be vulnerable with you. In return, you’ll gain a loyal friend." It can be just that simple. She went on to talk about her difference and how connecting with other people has helped her build confidence.  

Christine speaking to a group of Girl Scouts
Christine tailors each presentation to the audience. The power of vulnerability was important for people of all ages to hear at St. Justins. But when Christine travels to schools, she speaks more about how acts of kindness can prove to be powerful. She feels speaking to middle school students is important because she could have benefited from support during that time in her life. 

"Growing up, I didn't have CCA, or the support that is available now. That is why I am so passionate about helping to promote acceptance and awareness of craniofacial/physical differences, and choosing kindness. For me, that is so very important. All I have ever wanted is to be and feel unconditionally accepted and loved."

Great job, Christine. Keep on sharing your story. 

Friday, August 2, 2019

30 Stories 30 Faces 30 Years: Ashley and Jessica Bock





Ashley and Jessica are true twinners! These bubbly 15 year-old sisters hail from Houston, Texas. They make the most out of each day with one another, playing Minecraft, enjoying movies, and chatting away with their friends. They love attending CCA’s Annual Family Retreat and Educational Symposium each year. Ashley and Jess have attended 12 retreats. They have truly grown up and built bonds with their CCA friends throughout their lives. Jessica says, “At the Retreats, there are fun activities. We love getting to see all the little craniofacial kids and babies.

 Jessica and Ashley are indeed role models for other CCA Kids and Sibs. Jessica is very supportive of her sister, sticking by her side during everything from surgeries to social interactions. Ashley knows (because of their twin telepathy) that she will always be there for her. 

Jessica attends Cypress Woods High School in Houston, Texas. Ashley is homeschooled. Her mother teachers her English, language arts, while her grandfather helps teach her math. Every member of this family is involved in the twins’ success, but chiefly Jessica and Ashley, who work hard to make the world a kinder place every day!