Monday, May 18, 2020

Superhero Smiles, New Children's Book and Video Available NOW!

Photo Credit: Photo Provided by Jenifer Donatelli Ihm

A few months ago we shared the text of author, Jeni Donatelli Ihm's book, "Superhero Smiles." We are very excited to share that Jeni was able to get her book published after tweaking the narrative to help make sense of these tough times during the COVID-19 pandemic.  Even more exciting is that the book is available to you for free download at Eifrig Publishing. Click the arrow under "price" to select "Ebook Free" to get your copy today. A $1 donation to the UNICEF COVID-19 Relief Fund is highly recommended. And for those who like the smell and feel of a book, the paperback version is available on the Eifrig Publishing website for $9.99. Simply select paperback from the dropdown menu, and your $9.99 will be donated to the UNICEF COVID-19 Relief Fund, too. 

"Superhero Smiles" celebrates the different people whom all need to see us smile each and every day. Jeni hopes to foster a sense of safety and kindness for children as families wade through these uncertain times. The original text of the book was inspired by Jeni's son, who was born with a facial difference, cleft lip and palate. Jeni hopes to "allow families the space to have conversations at home about how to celebrate all children." Something that is very important during this scary time for our kids.

This version of "Superhero Smiles" celebrates the unsung heroes of today, making clear that we should "gift" smiles not only to our friends and family, but also to essential workers and first responders serving on the front lines of this pandemic. While Mr. Rogers encourages us to "look for the helpers," Jeni adds to this sentiment by suggesting that we share a smile to show our gratitude to them. 

Photo Credit: Screenshot of page from Youtube

You can access the book in audiovisual format, by clicking over to Youtube!  Jeni would love for you to read her book to celebrate the superheroes in your lives. Then, after you do, please shout from the rooftops on social media about her tremendous work.You can tag and follow Jeni on all the usual social media channels, including Facebook, Instagramand Twitter

Photo Credit: UNICEF
A children's book like "Superhero Smiles" is needed now more than ever. Children need to feel empowered during the COVID-19 pandemic. Jeni hopes that, "this one, small gesture" will "bring a little joy."  

We do need some joy right now. Please download the book, or watch Jeni read it with her kids on Youtube today. 

Happy Reading! And don't forget to smile with style. 

Friday, May 15, 2020

Get Your Virtual Retreat T-Shirt **Link To Purchase Inside**

Pre-Order your Virtual Retreat T-Shirt

Available through June 5th

We are still prepping our First Ever Virtual Retreat registration link & schedule. We will share with you all soon. We plan to invite our whole community. 
In anticipation, we're also pre-selling a T-Shirt to benefit CCA. Sales end in 3 weeks and shirts will ship directly to you the week after orders end, so you'll have it in time for the Virtual Retreat!
Please also share this email with your friends and family! 
We need your support! Anyone can order, all are welcome!

Tuesday, May 12, 2020

Kids First Pediatric Research Program Spring Webinar, Monday, May 18th from 3PM - 5PM (ET)

Editor's Note: Our friends at the Gabrielle Miller Kids First Pediatric Research Program's Data Research Center will host their spring public webinar next week on Monday, May 18th from 3:00PM - 5:00PM. Learn more about the work they do, and how it benefits kids with craniofacial conditions. Registration, agenda, and more information appears below. 

The Gabriella Miller Kids First Pediatric Research Program's 
Spring Public Webinar is Next Week!
Register Now

There's still time for investigators and community members to register for this free public web event, hosted by the NIH Common Fund-supported
Gabriella Miller Kids First Pediatric Research Program!

Follow the link or click here to register! While completing registration, We invite all attendees to submit questions and/or suggested discussion topics for our Q&A session following the webinar's presenters. Advance questions may also be submitted via email to [email protected]

Webinar Agenda
  • 3:00pm - Introduction; NIH Kids First Staff
  • 3:05pm - Kids First Orofacial Cleft Project Findings; Drs. Mary Marazita &
                     Eleanor Feingold, University of Pittsburgh
  • 3:40pm - Kids First Data Resource Center; Kids First DRC Staff
    • New Portal Features
    • Cavatica: Cloud User Workspace Introduction
    • User Workspace Demonstration; Owen Hirschi, Baylor College of Medicine
    • Kids First DRC Roadmap
  • 4:30pm - Kids First Program & Collaboration Update; NIH Kids First Staff
  • 4:50pm - Questions and Answers
We look forward to welcoming members of the scientific and patient community next week and hope you can join us!

-The Gabriella Miller Kids First Program Team

Monday, May 11, 2020

Then & Now - by Christian J. Hadjipateras

by Christian J. Hadjipateras

These are unprecedented times with the majority of countries around the world still in the midst of some form of lockdown. It is hard not to think of those who have been directly affected. Some have lost loved ones, while those on the front line are effectively sacrificing themselves for the sake of others. Mental health, which even today still has a stigma attached to it, has rightly come to the forefront of people’s minds and it is only positive that groups dedicated to this subject are continuing to spring up.

Another stigma, which I can write about from personal experience, is towards those born with facial differences. As with mental health though, we are moving forward in society with this as well. When I was born in the early 1980s with severe craniofacial anomalies (craniosynostosis, a bilateral cleft lip/palate, hypertelorism, among other issues), such support groups were virtually non-existent. My parents, still only in their late 20s when I was born, had no real support. My mother still remembers walking me down the high street and the looks people would give when they saw me. Even when I was a few years older, there were comments from tactless adults, never mind children. This was London; a society you’d have thought was generally educated and sensitive. But back then – and it really wasn’t that long ago – things just weren’t the way they are today and we should all be thankful that nowadays things are very different.

While I can’t say I was fortunate to have undergone 50+ surgeries in my life, I was nevertheless extremely lucky to have had parents who left no stone unturned in getting the best care for me and a sister who was a rock by my side during my difficult years of adolescence. My surgeries saw us travel to Paris, where I was operated on by the father of craniofacial surgery himself, Dr. Paul Tessier. He laid the groundwork for future reconstructive surgeries. I had my nose reconstructed by Dr. Gary Burget and Dr. Robert Walton in Chicago, two surgeons at the top of their game. My last major surgery was done by Dr. Henry Kawamoto in Los Angeles back in 2005 when I was 21; the age Dr. Tessier predicted I would finish by. Having experienced having these surgeries both in Europe and the US, it was always interesting to compare the two. I would say that the most notable difference with the two was conservatism in Europe (with the exception of Dr. Tessier), particularly the UK. The US surgeons were more likely to take calculated risks, which was mainly why we ended up travelling there because in my case risks needed to be taken.

My 20s were a real learning curve, but felt pride that I went to university and eventually graduated. Coupled with that I also achieved my aim of living in Los Angeles for a couple of years where I worked in the film industry. I always felt that because I essentially spent most of my childhood in hospitals that I was playing catch up and so in a sense, looking back, I feel that I in some ways lived my teenage years in my 20s. It was only when I got to about 26 that I felt happy within myself and this brings me to the main point of this article. During my teenage years and into my 20s, I opened up very little to anyone about my fears for the future and whether I’d ever get to where I wanted to be. My lack of confidence, especially in social situations, took its toll on me at times.

If anyone reading this can relate to not opening up to others, whether it be your family or friends, I can’t emphasise enough the importance of doing so. I know now how much easier things might have been for me had I done so. For those of us who have been stared at, it isn’t easy. Personally, this happens rarely compared to when I was growing up, but now and then I still get those eyes darting at me if I’m walking down the street, or at a bar or restaurant. If it goes on to the point where I’m irritated, initiating a staring competition usually does the trick. When it comes to children though, they might stare out of their innocent curiosity and I always find that smiling at them results in a smile back from them, which is always a feel-good action. We all have our different ways of responding, but I like to believe that in today’s world things are better for us with facial differences.

These days, I am living in Greece and trying to forge a screenwriting career. Writing has always been a way for me to express myself and thanks to my wonderful wife, who has helped me with my confidence in all aspects of my life, I’m hoping that my current project will go from script to screen in the not too distant future.

Finally, I’d like to ask any of you reading this to support the Children’s Craniofacial Association (CCA), an inspiring organisation, which I’m really looking forward to working with. Next week is the start of the 2nd Annual Face Equality week (May 17th-25th), with North America celebrating "Face Equality Day" on May 19, 2020, where Face Equality International will drop a video from faces and voices around the world describing what face equality means to them. I encourage everyone to check out CCA’s site, and the wonderful work it does for children and adults living with facial differences.

Thursday, May 7, 2020

Masked Perception: Face Masks and Facial Differences

The Centers for Disease Control and Prevention now recommends that Americans wear a mask when they venture outside to protect ourselves and others from contracting COVID-19. In some states, masks are required to be worn, or residents will be fined anywhere from $300 - $1,000. This new, sweeping requirement affects our community in unique ways. CCA set out to explore how masks change the perceptions of those with facial differences and how living in the masked masses impacts people with complex medical histories.
Author wearing a cloth, tie-back mask

First, many of us feel like CCA adult, Erin Richmond, does as she summed up recurrent themes in a recent Facebook post, “The anxiety [of seeing all these masks] comes from all the memories of being in the hospital. Reminds me of surgeries. I used to hate my mom and dad having to wear a mask when they would go back to the operating room with me. I can almost smell that awful hospital smell when I think about it.” Medical post traumatic stress disorder forces us to relive negative medical experiences from our childhood. Some of us are so triggered by this post-traumatic stress that we become physically ill while others may have an anxiety attack, become agitated, angry, or begin to cry. All of these emotions are ways our bodies process suppressed and/or unsuppressed memories of the lived experiences in hospital and medical settings. 

Additionally, not only does the appearance of others wearing a mask cause emotional strife, but it also can interfere with meaningful connection and communication. 

Photo Credit: Martha
Three weeks ago, while standing in line at the deli counter, I experienced a struggle to communicate my order with my mouth and nose covered by a mask. Previously I wrote, “the fabric blocked my lips, suppressed the sound coming from my throat and mouth. I prayed, as my heart raced, that he understood my order.” 

Pronunciation, the physical dynamics of speaking, is obscured by the mask, as is the ability to breathe, for many with facial differences. Many of us are mouth breathers, due to complications at birth with the use of our nasal cavities. Additionally, many children and adults with facial differences are also hard of hearing or deaf, forcing them to read lips in order to understand what is being communicated. This is completely impossible while wearing an opaque mask, or piece of fabric over the mouth. 

Photo Credit: KKCO TV, Kentucky
In Belgium, Reuters reports that the deaf community is speaking out, demanding that face coverings be made of transparent plastic. According to the article, not only is this helpful for individuals who are deaf, but also for those on the autism spectrum.

Adding to some of the frustrations of wearing a mask, many masks are not designed to fit unique faces and can cause negative sensory reactions. Of course, our community is creative, developing ways to make face coverings fit their heads. In addition, designs have improved drastically over the past few weeks. During this period of mask-wearing trial and error, one CCA Adult, Chelsea Buyalos, shared an encounter she had in a grocery store. A medical professional tapped her on the shoulder to inform her she was wearing her N95 mask incorrectly. At that point, she removed her mask to show him that her physical anatomy did not allow her to wear the mask as others do, since she has no ear on one side. She said the interaction was a bit awkward, but ended in a mutual respect and understanding - a medical professional trying to educate someone and then receiving an education of his own, when confronted with the fact that many people are having to make adjustments to fit their bodies.
N95 Mask
Photo Credit:

It’s not all bad news, of course. On the brighter side, several people with facial differences see masks as a great benefit -- an equalizer. For once, our differences may be covered by the mask, allowing us to enter professional environments or the supermarket free of stigma and stares. This was the case for Cassie Hunt, who shared this experience after wearing a mask during her work day as a public health professional. She says, “A mask covers most of my defect. I’ve noticed an increase in professional opportunities.” Clearly, Cassie recognized that she received improved treatment when colleagues and administrators could not see her differences. After having that experience she says she felt “validated” that her previous professional interactions without a mask did affect her ability to earn money, and access the ability to rise in her field. Cassie says, “It’s real, that I really am treated differently when I’m not masked. It makes me feel like I’m not crazy.” During the COVID-19 era, she is “thankful for the economic and professional benefits, but sad that this [stigma due to her facial difference] is still a thing. We are still here as a society.” 

One adult, who preferred to remain anonymous, said she was
Photo Credit: The Local, Newspaper, Germany
shopping in the grocery store with her partner, when a friend from her partner’s work approached them. Everyone was wearing masks, and introductions were made. The coworker made a comment to her partner, “Wow, buddy, how did you get such a looker? I can tell she’s beautiful even with the mask!” While this comment was a playful jest between coworkers, it felt extra inappropriate as her facial difference was not visible, and she wonders if the man would have made such an odd comment had they not all been wearing masks.

We still have a long way to go in acceptance of those with facial differences. Our hope is that through CCA’s participation in International Face Equality Day on May 19th, continued advocacy through our empathy-building and anti-bullying educational curriculum, and sharing of our personal stories, we can change the perception of people with facial differences throughout our society.