Farewell Gathering for World Renowned Craniofacial Surgeon Dr. Andrew Wexler

Thanks to Dr. Stacey Francis, we got the date set! Please join us Wednesday, December 6, 2017,  1PM - 4PM at Kaiser Permanente West L.A. Medical Center! This is a special farewell gathering for World Renowned Craniofacial Surgeon Dr. Andrew Wexler’s departure after 35+ years.

Parental Hardships associated with Craniosynostosis

An insightful article published via The Chicago Tribune about #craniosynostosis. This father tells his story and the emotional parental hardships associated with this #craniofacial condition. ❤
http://trib.in/2xnzHJy

My Craniofacial Blue Jay

My husband has dual talents, including photography. He took this amazing picture of a #craniofacial blue jay who visits me often.

Something happened to her beak... I'm not sure if this beautiful bird is male or female, but we can relate in more ways than one.

Lucas born with Lymphangioma Survives Surgery

Man, 22, survives surgery to remove huge tumor from his face after a decade of fundraising Lucas McCulley, 22, from Idaho, was born with disease known as lymphangioma. It results in a rare, benign tumor in the neck or head which can obstruct breathing He underwent 24 surgeries before age 10, Read more: http://dailym.ai/2yHIrhp

Anxiety, Depression Greatest in Younger Kids with Craniofacial Birth Conditions

Anxiety, depression greatest in younger kids with facial birth disorders. Another worthy mention of the recent study conducted by #craniofacial specialist Dr. Justine Lee of UCLA https://goo.gl/EEFQop By Carolyn Crist (Reuters Health)

True Beauty Comes From Authenticity - Not Perfection by Rasheera, Goldenhar Syndrome

Please read this AMAZING article written by Rasheera Dopson. I met her this last July at the Annual Children's Craniofacial Retreat, and we spent the majority of the time together - including a mini road trip to the zoo with Francis and Nicole!

Rasheera was born with #Goldenhar Syndrome and has overcome so many devastating obstacles in her life. This woman has a huge heart and soul, and she is beyond authentic. I love her perspective, and I'm so grateful to have her in my life!

She is currently launching a quilt and blanket drive for the Holiday with FACES National Craniofacial Association. The purpose of this drive is to provide warmth and convert to children who are currently in the hospital. They've had several different partners who've already donated over 20 hand-made quilts. This week their drive will be going live, so please support by making or sending in a blanket for children! ❤️

True Beauty Comes From Authenticity - Not Perfection https://goo.gl/uLdHZk #craniofacial

Jake Westbury Born with Treacher Collins Syndrome

After 21 years and 12 surgeries, Jake Westbury now has a face after being born with Treacher Collins Syndrome https://goo.gl/hiBnz9 | By Jane Hansen, The Daily Sunday Telegraph

Dr. Jeffrey Fearon Discusses Apert Syndrome

Dr. Jeffrey Fearon is a reputable Craniofacial surgeon and in this video he provides valuable insight and information about Apert Syndrome!

BIOGRAPHY: Dr. Jeffrey Fearon was born in the United States, grew up in London, England, and New Canaan, Connecticut. After graduating from the Mt. Hermon School in Massachusetts, he received his B.A. from Brown University. He pursued his post-baccalaureate studies at Columbia University in New York, and attended medical school at the University of Cincinnati. He completed a full six-year general surgery residency at the Deaconess/Harvard Fifth surgical service in Boston, and a plastic surgery residency at the Massachusetts General Hospital; both associated with Harvard Medical School. After a one-year fellowship with the Children’s Hospital of Philadelphia at the University of Pennsylvania, he joined the Dallas Craniofacial Center as a director. His practice is focused on the treatment of rare birth defects in children, who come to Dallas from all around the United States, as well as internationally. Dr. Fearon is actively engaged in #craniofacial research, has authored many scientific articles and book chapters, serves on the editorial board of Plastic and Reconstructive Surgery, and has received a U.S. patent for a bone distraction device used to treat unusual birth defects. Dr. Fearon is President Emeritus of both the American Society of Craniofacial Surgeons, and the Texas Society of Plastic Surgeons. He also has served on a number of community boards, is an amateur sculptor, enjoys helicopter skiing and is an avid surfer. He and his wife Regen are the proud parents of three wonderful children. #ApertSyndrome

https://youtu.be/Gn3kj6tG2RQ

Native American author born with Hydrocephalus talks race, poverty and reading

I love reading this! Native American Sherman Alexie entertained an audience of fans Sunday as he talked about growing up with #hydrocephalus, a #craniofacial condition where fluid builds up in the brain and swells the head. “It’s always important to see different places and the different faces and ideas that come with them. From where I’m from there would never be a talk like this.”

https://pittnews.com/article/123802/top-stories/native-american-author-talks-race-poverty-reading/

What the Controversial 'Wonder' Publicity Campaign Demonstrates About Craniofacial Equality

I understand why many are offended by the “Real-life Auggie” campaign being promoted by the film “Wonder,” adapted from R.J. Palacio’s New York Times bestseller of the same title. People feel as if they are being presented as a circus animal or behind a glass cage. When I first heard this metaphor, it sent razor-sharp shivers down my spine. We are people, not commodities.

While I firmly believe there is no ill-will intended by this campaign, it does not send the appropriate message. And it’s painfully excruciating to hear how this affects others. My friend and advocate Ann Piesen, born with Treacher Collins Syndrome states, “I’m concerned as it creates the impression that I’m being observed. We are not a novelty because of a movie.”

Initially, all I could think was, what is happening to our society and why haven’t we reached a level of mainstream equality yet?

I believe that this film has a powerful opportunity to raise much-needed awareness, and I’ve become grateful for its existence through the many relationships I’ve formed during its promotion. It’s natural for viewers to want to meet real people, because that’s how we can watch and authentically relate to the truths portrayed on screen. Personal experience is reality, and we can’t lose sight of that.

I’ve been advocating for awareness for over two years now, and I regularly speak with several families online who are hesitant for any craniofacial organizational involvement due to several different factors including fear of exploitation, further stigmatization, and money. I’ve retained the “Erin Brockovich” label in the craniofacial community as I work to provide valuable information, connections, and resources while maintaining confidentiality with these families, many of whom I carry meaningful relationships with. Most are aware that I work strictly as an awareness advocate and I do not promote fundraising or self-gratifying surgeries.

My goal is to foster community collaboration and awareness efforts so we can enact the real change needed.

I support many organizations for their awareness efforts, because without them we wouldn’t be here today. I am especially supportive of the annual retreats and events provided by the Children's Craniofacial Association. I have close friends now that I wouldn’t have had before.

While I don’t see any intentional acts of degradation in the campaign for of this movie, I understand why some find it offensive. Many seek to protect their children and to feel equal to everyone else. The craniofacial community is often sensitive, and rightfully so. We must collaboratively affirm our awareness actions and seek to protect each other in a compassionately equal and logical manner.

Our faces may reveal a physicality some can’t understand or relate to, but we mustn’t forget to express that we are people too. Like anyone else, we have thoughts and feelings deeply connected to the roots of our souls. We’re unique and competent individuals seeking to passionately experience our lives. Many of us have impressive educational skills and qualities that are missed because we’re often taken at face value.

Several medical research studies document that children born with craniofacial abnormalities typically have average intelligence. However, due to widespread stigma, too many people assume otherwise. There is so much value, worthiness, and beauty beneath the surface of our faces.

I can easily name dozens of individuals born with mild to severe craniofacial anomalies and their success stories. These individuals are government employees, writers, doctors, models, therapists, actors, educators, artists, singers, mechanics, nurses and more. We’re here to show everyone that we are not the stigma of our disability or defined by incapabilities.

We have exceptional talents within us all, but we must fight to find them together. We must supersede our fears and act bravely to accomplish what we desire in our lives. No fictional movie or book can achieve what we can together in the form of our collective voices!I hope you can resonate with my words because we're all in this together.

For more information on our collaborative efforts in raising further craniofacial awareness, please join us on Facebook at Craniofacial Support and Resources.

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READ: A recent medical study 'Children with craniofacial conditions face most difficult social pressures in elementary school' research by specialist Dr. Justine Lee of UCLA Mattel Children’s Hospital
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Published via The Mighty
Read More Articles written by Cynthia Murphy
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Article references 'Wonder' the book written by R. J. Palacio and Lionsgate upcoming film starring Julia Roberts, Jacob Tremblay and Owen Wilson

Legislation for Craniofacial Medical Insurance

Ann Quigley and mom Criss advocates for a bill that would provide insurance coverage for #craniofacial disorders in Massachusetts https://goo.gl/3vSGjj
“This legislation expands access to medically necessary treatments and alleviates the burden of exorbitantly high medical bills from those suffering from craniofacial disorders,” said Senator Cyr. “It’s about fairness. I appreciate Criss and Ann’s advocacy, and I remain optimistic that, through their work, the Legislature will be able to move forward on easing the financial burden on people who live with craniofacial disorders.” To write letters to the Joint Committee on Financial Services in support of the bill, please visit: https://malegislature.gov/Committees/Detail/J11/190

Young Girl born with Crouzon Sold to Gang and Abused

OMG, I'm absolutely appalled. 😨 Anabelle was born with Crouzon Syndrome, another common #craniofacial condition. She was sold to a drug gang by her mother and forced to beg. This is heartbreaking and hard to digest, but I'm so grateful she's here safe and alive. This beautiful girl is a survivor! https://goo.gl/ddrTwu ~ Thanks for sharing Beverley. <3

Baby Walter born with Complex Craniofacial Condition Defies Odds

I just connected with an incredible mother to this brave young boy named Walter! While it has not been made clear, he was born with a complex #craniofacial condition. He had to be delivered via classical cesarean.

His mother had a physician tell her verbatim "I would rather walk through the gates of hell than give you this c-section because the fetus will not live." Which is honestly not the worst thing she had doctors tell her. Walter is a miracle because he has defied all odds thus far! Follow his journey via their FB Page 'Wishing for Waddle' https://www.facebook.com/wishingforwaddle/

Ivanka Danisová Junior Lawyer born with Goldenhar Syndrome

This woman is incredibly bold and beautiful. Ivanka Danisová was born with Goldenhar syndrome, a #craniofacial birth defect. The junior lawyer was told she would die young as a result of the rare condition and she spent most of her life covering up the side of her face with her long hair. The 30-year-old has defied medical expectations and has undergone treatment. ❤️ #GoldenharSyndrome

http://www.dailymail.co.uk/health/article-4717384/Woman-spent-life-covering-half-face.html#ixzz4nUUxkkAV

Stephanie (8) Treacher Collins Syndrome - Be Yourself and Nothing Else

I connected with mother and friend Janet last year; she sent me several videos yesterday of her vivacious 8-year old daughter Stephanie. She was born with Treacher Collins Syndrome, including severely restricted airways. However, she doesn't allow it to get the best of her!

This marvelous young girl is hilarious, and I can't get enough of her energy! 😂 She is beyond inspiring, which is significant because many of the same age needs to see that it's okay to be yourself!

I'm so grateful to have met this amazing family!  #craniofacial #treachercollins

Treat Craniofacial Infections with Colloidal Silver

If you have a #craniofacial and find yourself dealing with one or more symptoms of #infection, please try Colloidal Silver. It's a natural homeopathic remedy that has been proven and used by doctors worldwide. There are no known side effects, and it also helps improve antibiotic effectiveness. This solution has helped heal many of my illnesses caused by Treacher Collins.

There are so many other things to learn about this amazing earthy compound. Please PM or comment below if you any questions or concerns. 💜

This can be purchased at https://www.purestcolloids.com/mesosilver.php #treachercollins

Jeff was born with Nager Syndrome

Jeff was born with Nager syndrome, a rare #craniofacial disorder that affects the development of the face, hands, and arms. He communicates using assistive technology. This cranio diagnosis results in shorter arms that prevent him from driving. Watch Jeff's Dream video Special Books by Special Kids at https://youtu.be/_6uLmkE3tpE

Lisa and Cynthia - Best Friends with Treacher Collins Syndrome

Yesterday, I returned home from another sleepover at Lisa's house! Many know that we share Treacher Collins Syndrome and we relate on many things. We're both educated in similar career interests and we have a sister-like bond!

She's one of my best friends who I wholeheartedly trust. We had vegan dinner, watched two movies, and stayed up talking about life and #craniofacial until almost 2AM. 😂

Her parents are so loving towards me, like a father and mother I've never had. I'm very grateful to have such wonderful people in my life! ¡Los amo a todos! ❤️ https://www.facebook.com/CraniofacialVegan/posts/496074334085425 #treachercollins 

Craniofacial Dental Plaque - Periodontal Disease

I'm on the way to the orthodontist then to Lisa's for a long overdue sleepover!

If you have a #craniofacial condition and suffer from severe gingivitis and periodontal disease, resulting in gross built-up plaque on your teeth, you're not alone. Before now, I had to pay money out-of-pocket to get thick yellow plaque removed every 2-3 months. 😫

This organic brushing rinse made by Essential Oxygen is AMAZING, it took most of my problems away, including gum recession.

Treat this just as mouthwash, swish for a few minutes, then brush! Use this rinse at least three times a day, until you notice the significant improvement. The key is to be as hygienic as possible so you won't lose any teeth. The results are incredible! ❤️

Here's a link where a 16oz can be purchased. https://www.iherb.com/pr/essential-oxygen-organic-brushing-rinse-peppermint-16-fl-oz-480-ml/28373

Amelia Katja was born with Apert Syndrome

This little beauty has tremendous strength! Amelia Katja was born with Apert Syndrome. She has a soft cleft palate, fused coronal sutures, as well as fused fingers and toes.

https://www.facebook.com/ameliakatja/ #apertsyndrome #craniofacial