Wednesday, February 26, 2020

Research Datasets Available for Medical Researchers, Geneticists Via Gabriella Miller Kids First Pediatric Research Program

Editor's Note: Our friends at the Gabriella Miller Kids First Pediatric Research Program has an exciting announcement about newly available datasets for researchers. With more eyes on these datasets, we can get closer to causes for genetic, craniofacial conditions and syndromes. Take a look, share with your medical providers to see if they may have a research interest that might fit these datasets. Raise awareness through access to this wealth of raw data collected by researchers across the country. 

The National Institutes of Health’s (NIH) Gabriella Miller Kids First Pediatric Research Program’s (“Kids First”) vision is to alleviate suffering from childhood cancer and structural birth defects by fostering collaborative research to uncover the etiology of these diseases and supporting data sharing within the pediatric research community. The program continues to generate and share whole genome sequence datasets from cohorts of children affected with these conditions (  Researchers can access, aggregate, analyze, and share these data as well as associated clinical and phenotypic data through the Gabriella Miller Kids First Data Resource, which includes the public-facing, web-based portal, the Kids First Data Resource Portal(link is external), and cloud-based workspaces.
NIH has a strong interest in encouraging the use of this dataset to accelerate genetic discovery and ultimately inform clinical practice and improve health outcomes.  However, many excellent grant applications that involve utilizing Kids First data go unfunded.  Additional avenues of funding through collaborations with non-governmental organizations can amplify the value of these data and improve pediatric preventative measures, diagnostics, and therapeutic interventions.
To this end, the organizations listed on this website ( have agreed to be contacted by researchers who have applied for NIH grants (such as the Kids First R03) to analyze Kids First datasets, and whose applications were reviewed through the rigorous NIH peer review system, but who ultimately were not funded.
If you represent an organization that would like to provide a second chance to Kids First applicants or you are an applicant with questions about the Kids First Second Chance, contact [email protected]v(link sends e-mail).

Monday, February 24, 2020

#ChooseKindTuesday: Jenna Visits Massachusetts School

By Jenna Ottow and Kara Jackman 

Jenna Ottow visited Dexter Southfield School in Brookline, MA to share her #ChooseKind story to all 4th grade classes. She talked about the surgeries, school experiences, and the positives and negatives of growing up with a facial difference. Dexter Southfield's motto, 'Our Best Today, Better Tomorrow' was quite apparent in the audience of 40 students that listened attentively in the small auditorium  In preperation for their 'Diversity Day', the students had been were reading stories demonstrating diversity and the ability to overcome it. Students shaed how the book “Wonder" stood out the most because they could relate to Auggie and his fellow students as they were also in school. Jenna shared how being different taught her to overcome shunning, lonliness, and bullies, like Julian, the bully depicted in R.J. Palacio’s New York-Best selling book.
Photo Credit: Dexter Southfield School

The students were encouraged to ask questions about bullying, staring, and a life that involved a few extra hospital visits than most. Jenna was touched when students asked questions in order to relate to Jenna, and find commonalities between the students and her, and eachother. One wise student asked, “did you ever let the bullies get inside your head?” which is a pretty profound question for anyone to ask, never mind an elementary school student. Not expecting this, Jenna paused and admitted that although it's not necessarily easy, she did allow that to happen, and went on to say that those words from bullies as a youngster, still haunt Jenna today. Jenna explained that by taking the negative and turned it into a positive by using the hurtful words, shunning, and stares, to turn them into confidence and knowledge knowing that their bullying is more about them and less about whoever it is that they choose to bully.

Research Participants Needed For Emory Cleft Project Study

Research Opportunity for Cleft Families

An invitation from Grace Carlock from Emory University

We are reaching out to you because after a successful year of recruitment in 2019 we are ready to start our next round of recruitment for the Emory Cleft Project.

In 2020, we have expanded our online presence to include a website ( and are working on our social media presence as well. We are also gearing up to begin another arm of recruitment with healthcare providers and cleft clinics both locally here in Atlanta, as well as, other locations around the country.

More information on the study can be found, here, at our website, including procedures, forms, and more. We are still recruiting for all orofacial cleft types (cleft lip, cleft palate, cleft lip and palate) in the United States and Canada. Also, we are recruiting Van der Woude Syndrome families, nationally and internationally.

We have received back about 55-60% of the sample kits we mailed out. For those that received our kits, but didn't return them... it isn't too late! We would be happy to have people send in their kits. They can contact us via our website for new kits or return labels if needed.

Thank you so much again for all your support, and please let us know if there is any more information that we can provide to you on our ongoing research!

Learn more about our work in the flyer below...

Tuesday, February 11, 2020

Building Resiliency: You Can Change Your Mood, But How?

Photo Credit: Joan Marcus via

Scientists say the strongest of the five senses tied to memory is smell. I disagree. Hearing is a far stronger prompt for my memories. Specifically when those memories are tied to music. Often I hear a song and I’m sucked into a time traveling wormhole to the past. In an instant, I’m experiencing the emotion from the place and time I first heard the song. Some may say this is a superpower. I wouldn’t argue with them. Most of the time this is a good thing, while other times it’s not. It’s pure kryptonite. Thus I have to be careful. In order to experience motivation and a positive mental outlook, I must pick a song that will inspire that mood or state of mind. 

Today, I was sad so I decided to listen to “Wait for it” from
the original broadway cast recording of "Hamilton." I recalled where I was when my family got tickets, then I remembered waiting anxiously on the sidewalk in NYC outside the Richard Rodgers theater before the show. Finally I recall watching the play from our back row seats of the dark mezzanine. Then presto-change-o, my mood immediately changed. I was smiling and singing along loudly, proudly in my car. 

What’s your sense super power? How can you turn an anxious mind into peace, or a frown upside down? 

Start with your senses...and you may just learn! 

#mentalhealth #chronicillness 

Friday, February 7, 2020

Building Resiliency: Mindfulness In Every Day Activities

I love my tea! For me it’s more than hot, brown liquid that fuels my day and hydrates my skin. Tea is an experience. the ritual begins with me pouring water into the electric kettle, listening it it boil. Then I delight in selecting a tea from my extensive collection. I love all the bright packaging, or crinkly cellophane. Finally, I drop the bag in one of my many favorite mugs and pour the steamy, hot water into the mug. I love letting the steam waft up on my face and feel the hot cup in my hands. Tea is a meditation that increases our awareness of the present moment through the five senses. 

There are so many ways to be mindful! You can run, sit and breathe, wash the dishes mindfully, and so much more. The idea is that whatever activity you choose you only focus on the activity and its small component parts. For instance, with walking or running, one might focus on how their right foot hits the ground on each step. While washing the dishes, one might inhale the soap's fragrance, feel the hot water on their hands, and the sponge removing a bit of stain from a the dish. 

The idea is to be completely in the moment and one with the activity, not thinking about your homework, or what you need to do next to help your child. If we take things one moment at a time, your anxiety will decrease, and you will feel refreshed! 

Give it a try. See where you can apply this practice in your daily life. What will be your mindfulness practice. 

Learn more about mindfulness here

Wednesday, February 5, 2020

#ThankfulThursday: Seneca Valley High School Student Raises $7,000 For CCA

Madisyn Bower inspired Seneca Valley High School student, Maddie Karchut, to host a spaghetti dinner to benefit CCA. This was not just any spaghetti dinner, though. No, Maddie and the surrounding north west Pennsylvania community came together to raise $7,000. 

The event featured a sumptuous meal feeding 200 people with six families in attendance affected by craniofacial conditions. 

Over 200 local businesses were contacted for donations and 80 of them came through with something to give towards one of the 45 raffle baskets that were on display around the room. Other sponsors found ways to make the day special for all who attended. Twenty five volunteers coordinated the activities for the 200 supporters, ensuring everything ran smoothly. 

After all was said and done, the leftover food and supplies were donated to Light of Life Rescue Mission, a homeless shelter, in nearby Pittsburgh. A fine way to pay forward the spirit of kindness, good karma, and great fundraising from a super successful event. 

Thank you Maddie Karchut, we are confident that you will make all your dreams come true in the bright and bold future that lies before you after high school graduation. 

Congratulations on running a successful fundraising event that will bring medical care to kids in need, provide social networking for families feeling alone, and provide opportunities for learning about empathy and kindness in classrooms around the country.  

Introduction of International Media Standard for Persons With Facial Differences

Introduction of International Media Standard for Persons With Facial Differences 
Media urged to take care with language, tone, and imagery when covering facial disfigurement

Children’s Craniofacial Association (CCA) is proud to support the new International Media Standard on Disfigurement launching today, February 5th, 2020, by Face Equality International, the global alliance representing people with facial differences.

Formed 12 months ago, Face Equality International’s first major priority, as defined by its 33 NGO members, was to produce internationally-applicable standards for print and digital media, television, radio, streaming, and other forms of visual broadcast. The new Standard is designed to both guide best practice in reporting on the lives and issues experienced by people with facial differences, and to prevent misrepresentation, stereotyping, and prejudice. The unanimous view of the alliance’s member organizations is that people with facial differences and disfigurements are far too often described in the written and broadcast media in negative, overstated, or outdated terms such as ‘horribly disfigured’ or ‘scarred for life.’ A recent example from the UK’s Daily Mirror was the use of a headline that read “Disabled girl banned from nursery as her ‘deformed skull will scare other kids.’"

People with craniofacial syndromes and other facial differences are also often portrayed as objects of pity and sympathy in television, film, and news reporting. A recent news story in the United States of America about a woman whose face transplant read,“Her body is rejecting a transplanted face — and one solution is unthinkable,” as though having a facial disfigurement is “unthinkable.”

Recent examples of negative broadcast incidents include the talk show host, Wendy Williams, mocking actor Joaquin Phoenix and his cleft lip by tugging on her own lip and referring to him as “oddly attractive” a day after he earned a Golden Globe Award for Best Actor.

Member organizations speak of people they support as experiencing endemic, low self-esteem in our global, “look-perfect” culture. People with facial differences also experience social isolation, ridicule, staring, bullying and low expectations in school and discrimination in the workplace. Many are the targets of abuse online. In many countries, disfigurement goes hand in hand with poverty, prejudice, and exclusion. Much of this can be perpetuated by poor media reporting, and uninformed broadcast coverage. The goal of FEI’s Media Standard is to combat these preconceived notions and to improve the lives of individuals with facial differences.

FEI member organizations also believe that more often than not, media reporting is unintentionally thoughtless or uninformed, rather than malicious. We believe reporters are happy to cooperate when offered guidance. This is why the alliance wants to work closely with media professionals to support them in thoughtful reporting.

The International Media Standard on Disfigurement is the result of the alliance working closely with media professionals, journalists, and its member networks over the past year to create a benchmark that tackles any uncertainty or awkwardness around how to portray, describe, and depict people with facial differences in the public eye.

In an effort to encourage respectful, responsible journalism and broadcasting, the alliance wants to support professionals in getting it right, without having to publicly denounce them. The Standard has been thoroughly user-tested by member NGO staff, volunteers, and users with the intention of counteracting stigma, while giving a voice to those who often get overlooked, and showing what it’s really like to look different in our global media culture.

James Partridge, founder and Director of Face Equality International, says:

“The media is fascinated by stories about children and adults who, like me, have distinctive faces, but the way we are described — in headlines, pictures, films and words — needs to be thought about much more carefully than at present. Too often stories that could usefully inform the public are distorted by words like ‘deformed’ or by implications that the person concerned dislikes their face. Many media organisations do get it right, but not as often as they could. We want to work with media professionals, agencies, and organizations to support them in getting it right every time.”

Erica Mossholder, MBA, Executive Director of Children’s Craniofacial Association says, 

“We believe this Media Standard is important because it highlights our on-going effort advocating public acceptance for appearance diversity, and the FEI is doing the critical work of engaging with media and governing bodies to suggest tangible guidelines for how people with facial differences should be respected, represented, and included in the workplace, media, and beyond.”

CCA is proud to support the FEI’s new Media Standard and are happy to supply and share it upon request. Please note, while Children’s Craniofacial Association prefers the word “difference,” to “disfigurement,” we honor the use of “disfigurement” when preferred, such as it is more widely accepted in the UK and parts of Europe.

Thank you for reading. Please click the link below to access the Face Equality International  media standard.