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. 


Sunday, May 17, 2020

It's Here: International Face Equality Week



Solidarity amongst charities supporting people with facial differences needed more than ever, so 35 charities unite for International Face Equality Week 

This week marks the second International Face Equality Week. Global charities, from Taiwan to South Africa, and North and Latin America, will join forces to continue campaigning for a better, fairer world for people with facial differences.

Despite the unprecedented times stemming from the Covid-19 pandemic, 35 member NGOs of the alliance, Face Equality International, have decided to push forward with a weeklong digital campaign. They will highlight the issues and prejudices people with facial differences experience, including health inequalities, online abuse, and hate crimes.

Advocates worldwide have come together to provide a source of hope, a sense of community, and assurance that their rights are continuing to be fought for across policy, the media, education, and day-to-day life.

Facial difference, sometimes called “disfigurement,” whether congenital or related to trauma or an acquired condition, is a neglected global human rights issue. Members continue to identify amongst the people they work with feelings of low self-esteem in the global ‘look-perfect’ culture, isolation, bullying, staring and questioning in public places, low expectations in school, problems getting work, discrimination in the workplace, abuse on social media and stereotyping in the media. In many countries, looking different goes hand in hand with poverty, prejudice, and exclusion.

This year’s campaign will continue to reshape the narrative around what it’s really like to live with a facial difference right now, by telling real-life stories from across the globe and challenging misconceptions. With a series of films, and a social media based ‘Selfie Challenge,’ the campaign for Face Equality strives for a world where differences are respected, valued, and celebrated.

Taking a selfie, and in turn, taking a stance by sharing it with the world, can be incredibly empowering for someone with a facial difference. Members want to use this year’s International Week to prove that selfies aren’t about ‘looking perfect’ or fitting in with the crowd.

By encouraging online communities beyond those who have facial differences to take part in the campaign, the alliance wishes to create greater understanding, awareness, and solidarity for the cause. In a globalized world that tells us we should look a certain way, the aim is to prove popular opinion wrong, and show the world that you can be confident, proud, and most of all, equal. No matter what your face looks like.

James Partridge, founder and Director of Face Equality International, says:
“International Face Equality Week this year will be marked with many people around the world in lockdown, physically separated from their friends and loved ones. Our intention throughout the Week will be to make common cause with everyone as we endure this awful pandemic — those with facial differences and those without. All human faces should carry equal value and we hope that this Week will help to instil this ‘new’ face value as part of the new normal as we emerge from the pandemic.”

Erica Mossholder, Executive Director of Children’s Craniofacial Association, says:
“Now more than ever talking about our facial differences is relevant. Nearly all of us are at a higher risk for respiratory issues and our unique anatomy affects our use of PPE, like masks. There is no part of our life that has not been affected at some point by having facial difference, but this year, our quest for equality and a voice is a life and death issue. We hope to bring awareness and understanding to the public, all while celebrating our lives and the stories we represent.”

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Notes to editors
Media inquiries
Erica Mossholder, Executive Director, Children’s Craniofacial Association
emossholder@ccakids.com
214-570-9099

Remote interviews can be arranged with Dr. Partridge and other spokespeople. Case studies and interviews available upon request.

For more detail on Face Equality International, please see https://faceequalityinternational.org
For more detail on Children’s Craniofacial Association, please see http://www.ccakids.org

Support the campaign across social media by following @FaceEqualityInt and @CCAKids and use the hashtag #FaceEquality

FEI has member organizations in the following countries:

- Australia
- Belgium
- Canada
- Czech Republic
- France
- Italy
- Nepal
- Nicaragua
- South Africa
- South Korea
- Switzerland
- Taiwan
- Turkey
- The Netherlands
- The UK
- The USA


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 KidsFirst@od.nih.gov

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.