JoAnne Treacher Collins Syndrome

JoAnne discusses her journey as an illustrator and animator at LoveLove Films and Treacher Collins Syndrome. https://lovelovefilms.com/blog/animator-joanne-salmon-journey/ #craniofacial

Children with Craniofacial Conditions Face Most Difficult Social Pressures in Elementary School

We've been discussing this for quite some time now! Research conducted by Dr. Lee finds that children with craniofacial defects face most difficult social pressures in elementary school. Furthermore, studies have found age-related differences in psychosocial function of children with CFAs. Thank you Dr. Justine Lee for your dedicated and passionate efforts in treating and researching craniofacial abnormalities!

Research Alert: http://newsroom.ucla.edu/releases/children-with-craniofacial-defects-face-most-difficult-social-pressures-in-elementary-school

Research Findings: at: http://journals.lww.com/plasreconsurg/Abstract/2017/10000/Age_Related_Differences_in_Psychosocial_Function.25.aspx

Viral Craniofacial Makeup Vlogger

I've shared this before. ☺ Marimar once hid from strangers because of her large facial tumor, but now she's a popular makeup blogger and Zumba instructor. She was born with a cystic hygroma, a type of #craniofacial birth defect that often grows as the child does. This magnificent woman does not allow her condition to defeat her as she continuously perseveres while redefining beauty. ❤

Watch YouTube video or read more at: http://www.foxnews.com/health/2016/08/16/woman-with-facial-tumor-gains-fame-as-makeup-vlogger.html

Inspirational Vlogger Redefines Beauty - https://youtu.be/D6BJtZZGccE

Apert Syndrome discussed in detail by Professor David Dunaway, Plastic & Reconstructive Surgeon at LCU

Professor David Dunaway, Plastic & Reconstructive Surgeon at LCU discusses #Apert Syndrome, a common #craniofacial disorder. https://youtu.be/BAnuetkMkTYz

Nyle DiMarco Talks About Coming Out As A Member Of The Deaf

Nyle won ANTM and then started a movement! Check out The Nyle DiMarco Foundation where they empower lives together while advocating for equality for the #deaf and hard of #hearing. See YouTube video where Nyle talks about coming out as a member of the deaf @ https://youtu.be/nwHN3WdO1Vg #craniofacial      

The Airway, Breathing and Orthodontics

Another interesting read... I'm not convinced that having surgery younger is better - only because multiple doctors and specialists recently told me that I got my first major jaw reconstruction too young (19). This then resulted in my Treacher Collins condition worsening. I had braces at age 12 and then had them removed eight years later. Now I'm starting the process all over again. I've met several #craniofacial adults who started this process much later in life than I did, and they had excellent long-term results.

Parents, please just ensure you do your online research, talk to other parents who have experience by connecting with them in FB groups. Also, it never hurts getting a second or even a third medical opinion.

I will, however, say this article is very accurate as to the problems we regularly face. Dental hygiene and self-care pro-activeness are necessary. I will touch more on this subject soon. 💙

https://connectingheads.com/articles/the-airway-breathing-and-orthodontics/

Beautiful girl born with Nager Syndrome and multiple craniofacial conditions

Youtube vlogger, Alicia, is a beautiful girl who was born with #Nager Syndrome as well as multiple #craniofacial diagnoses. https://youtu.be/LfJSE4cBhMo

On the Other Side of Craniosynostosis

Excellent article about #Craniosynostosis, a #craniofacial disorder The first line is powerful and compelling. https://goo.gl/yD4jqQ

Ashley Carter doesn't allow Treacher Collins Syndrome to defeat him

Amazing video! Ashley has Treacher Collins, we're inspired by his perseverance to raise awareness and end #bullying! https://www.facebook.com/a.carter1234/posts/1661333393885971

Charlie Nath, 11, Crouzon Syndrome Shares a Simple Message!

Charlie Nath, 11, has a rare #craniofacial disorder known as #Crouzon syndrome. He continues to inspire others with a simple message! https://goo.gl/xrFqW7

Liam's Story Chronicling Treacher Collins Syndrome

Liam is a courageous young man also born with Treacher Collins Syndrome!

I've personally experienced having silicone ears made for me to glue on. I was 12 years-old, and I was very excited because all I was seeking was to look "normal". Once I saw them in person and tried them on, I was devastated. I didn't like they way they looked or how they made me feel.

At that moment, I decided to leave my ears be, because it wasn't worth the emotional pain anymore. I dropped the ears and ran out not considering how much work the doctors had put in making them. That's my only regret - not thanking them for their efforts making them for me. If you're thinking of going through this just to accomplish a normal appearance - please spare yourself and choose to love yourself instead. <3 br="">https://youtu.be/bi8GUq2bAi0

Girl Born with severe Craniofacial Disorder Defies the Odds

Wow... This beautiful warrior was born with a severe craniofacial disorder defies the odds by reaching her ninth birthday https://www.youtube.com/watch?v=qts29mkmTYw

Craniofacial Differences or not - Make a Moral Choice and use your Voice

Do you believe in energy? I do. I believe that everything we surround ourselves with including music and people imparts within us. Do you believe in signs? I do, they’re everywhere. We’re surrounded by a loving light, my friends.

I’m not really into being a celebrity fan unless there’s meaning. I’ve met countless celebrities growing up in Big Bear while working the luxury hotels and ski resorts as a teenager into adulthood. Personally, I think celebrities are overrated, but not the inspiring ones. You know the influential people who are trying to do something about the ugliness out there in the world? Stuff is happening right in front of our eyes, but we’ve been blinded, my friends.

Look beyond the news, and you will find what I’m talking about. Nothing is being hidden from us; the deception is in plain sight. We're seeing more cases where causes of immorality and #charity are being combined and defined together - I'll get to that later on.

A few weeks ago I learned of the harsh publicity Taylor Swift endured. Terrible things were said about her. One thing that gravitated me towards her is how she took a stand for our rights, as women and many other things. Abuse is #abuse, and it should never be tolerated. If you don’t recognize by now that we the people are responsible for standing up for ourselves and our American rights - you need to take a minute please because we can lose them. We need to keep this world in balance and harmony with what’s morally right. Take a stand for what's right, even if you're terrified. The escape from your fears will be far much easier than what's to come.

We all have a story and different traumas - some in more severity than others. I know I’ve gotten abused in more ways than I can count. I was born with a physical deformity, my step-father did terrible physical and sexual things to me starting at a young age, and my mother abandoned me altogether. I could go on, but I'll spare you the details... I thought about suicide for years, and I hated myself internally, though I showed others a more confident side.

For years I blamed God. I engaged in secretive, emotional self-harm, and I acted out, but I stayed passionate in my career ambitions. I never stopped working and going to school, and I've never quit pursuing my rights for #equality.

I may have failed standing up for my rights as a child, but that all changed when I became an adult. I've filed several cases against employers and every time I was asked 'what financial incentive I wanted' when all I was seeking was EQUALITY. We are all worthy of that and more. Sadly, I see that it’s starting to slowly diminish in today's society.

A few days ago I heard Taylor’s Swift new song, and now it’s stuck on loop in my head LOL. That’s where energy comes in. You may not realize that what you listen to does, in fact, affect you. And with that said my friends, you can, and you will feel the energy coming from it. I felt genuineness from Taylor's song, and I’m grateful she took a stand for all of us. I hope you'll continue to do the same, if not make the change.

Fight Against Cancer for all Grandparents

My beautiful and magnetic 83-year-old granny has Stage IV #cancer. 💔 Inorganic and #GMO foods have claimed many of her organs, and now she's too weak for chemo. But, she's determined to survive because she says, "it's too soon, and there's still things left for her to do." Today she's committed to change her #health as she continues to fight for life. She inspires me every day and supports the Assuaged movement, I love her so much. 💜

Please snap and share a selfie to raise awareness and save our #grandparents from these medical illnesses.   

Things Not to Say to Someone With a Facial Disfigurement

I hope everyone is staying safe out there! Here's another video for Craniofacial Acceptance Month. 'Things Not to Say to Someone With a Facial Disfigurement'. I enjoyed watching this one. https://youtu.be/PWD12X0FfvU

Katie born with Megalencephaly Craniofacial Disorder

Perfect for #Craniofacial Acceptance Month and so #inspiring to watch. What a beautiful family. ❤️Katie was diagnosed with megalencephaly at birth, a growth development disorder characterised by the overgrowth of the brain. https://youtu.be/SD-0icVfS1s #specialneeds #beauty

Craniofacial Resources for International Day of Charity

Below I've listed some link resources for craniofacial families in need of financial assistance.

Today is International Day of Charity, which promotes charitable efforts made to ease poverty worldwide. People are in need more than ever today, especially given all the recent earthly disasters.

I've met many families within the craniofacial community who do not have the income resources for medical bills let alone being able to attend gatherings. There are many resources out there to help you. For more information, please visit these websites. Please comment in this thread if you have any further questions or needs!

1. https://goo.gl/mVFovH - CleftLine

2. https://goo.gl/hgAFPZ - NeedyMeds

3. https://goo.gl/1b1fM8 - F.A.C.E.S

Updated List of 2017 Craniofacial Events

Happy Saturday & Craniofacial Acceptance Month!

I'm still working on my challenge video nomination. Also, the events page is currently being updated. If you're hosting or know of any upcoming craniofacial events - please let me know. I am happy to share any cranio related events. You should be able to post any events to the group yourself directly.

I've been dealing with some medical issues and working to launch our charitable project. But I'll always be dedicated to sharing these cranio events. Meeting others in your realm of experience is remarkable and life-changing. I hope this helps you connect. You can view the List of updated events at: Craniofacial Events and Connection<3 br="">