NORD:National Organization for Rare Disorders
NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.

BELL’S PALSY
NINDS Bell’s Palsy Information Page
Located on the National Institute of Neurological Disorders and Stroke web site. An easy-to-understand and comprehensive page for your questions.
www.ninds.nih.gov/disorders/bells/bells.htm

CLEFT LIP/PALATE and Craniofacial Syndromes
American Cleft Palate-Craniofacial Assocation (ACPA)
Comprehensive care teams. A community that knows your journey.
Find ACPA approved cleft and craniofacial teams, printed and online educational resources, and industry leading research and advocacy.
acpacares.org

MOEBIUS SYNDROME
Moebius Syndrome Foundation
Newsletters
Annual meetings
Social and emotional support resources
www.moebiussyndrome.com
https://www.facebook.com/moebiussyndrome/

NAGER/MILLER SYNDROMES
Foundation for Nager and Miller Syndromes
The Foundation for Nager and Miller Syndromes (FNMS) is an international support group dedicated to helping those affected by these two similar and extremely rare, genetic conditions which involve moderate to severe facial and limb anomalies, but do not usually affect intellect.
These syndromes often affect one’s ability to see, hear, breath, eat, walk, talk and write. FNMS serves as an information clearing house to help educate families and professionals about Nager and Miller syndromes. FNMS’ extensive library of resources and medical reports on these rare conditions are available by request. Challenged families join the FNMS network for support, referrals and sharing of helpful experiences.
DeDe Van Quill, Director
800-507-FNMS
E-mail: [email protected]
www.fnms.net

NEUROFIBROMATOSIS
Children’s Tumor Foundation
Ending Neurofibromatosis through research.
E-mail: [email protected]
www.ctf.org

Neurofibromatosis, Inc. (NFI)
Join our mission to find treatments and a cure for neurofibromatosis.
301-918-4600
800-942-6825
E-mail: [email protected]
www.nfinc.org

VASCULAR BIRTHMARKS
Sturge-Weber Foundation
We exist to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions. We support them with collaborative education and advocacy in tandem with translational research as we promote effective management and awareness.
Karen Ball, Founder and Director
800-627-5482
www.sturge-weber.org

Vascular Birthmarks Foundation
An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment, provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance for individuals with birthmarks.
Dr. Linda Rozell-Shannon, PhD President and Founder
877-823-4646
www.birthmark.org

VELO-CARDIO-FACIAL SYNDROME
Northeast VCFS Support Group
603-898-6332
E-mail: [email protected]

Beckwith-Wiedemann Children’s Foundation
This information and support network is full of parenting and medial information. Get their new free DVD and learn all about the diagnosis, treatment, and challenges of this syndrome.
Cheryl Hendrickson
425-338-4610
E-mail: [email protected]
www.beckwith-wiedemannsyndrome.org

Children’s Skin Disease Foundation
CSDF enhances its full educational services with camps on both coasts of the US. Ask for their DVD and you will see how wonder-filled camp can be for these special children.
925-947-3825
www.csdf.org

UK Based Support
Headlines
Supporting all those affected by craniosynostosis and rare craniofacial conditions.
https://www.headlines.org.uk/

Vanessa Acero Psychological Inc.
Mental Health + Wellness Coaching
About Owner: Vanessa Acero-Licensed Clinician + Hemifacial Microsomia Warrior
[email protected]
Phone:(818)203-7410

Peter’s Rockin’ Ear
Peter wishes he could be like everyone else, but he was born with only one ear. He tries to make one himself, but nothing works until his parents take him to an ear store. But will it stay on long enough for him to rock out at Shredapalooza?

Based on the true story of Peter Dankelson, this picture book encourages rock stars everywhere to embrace what makes them different.

Wonder
By R.J. Palacio
Wonder is the story of August (Auggie) Pullman, born with a facial difference that prevented him from going to a mainstream school—until now. He’s about to enter 5th grade at Beecher Prep, and if you’ve ever been the new kid, then you know how hard that can be. The thing is Auggie’s just an ordinary kid, with an extraordinary face. But can he convince his new classmates that he’s just like them, despite appearances?
You can order a special edition copy of Wonder from the CCA webstore or apply for a discount rate for bulk purchase by contacting the office.

The Extra Hole
Jennifer Moné, Ph.D., PLLC
Parents of a baby born with a cleft grapple with balancing love and care for their new baby AND can struggle with the emotional toll of what it’s like to have a child with a cleft. This book addresses several areas families face when a cleft is present while enticing viewers with its beautiful illustrations. In developmentally friendly language, the information helps babies and their young siblings know what to expect (a cleft is called an “extra hole”) and the book also assists parents with the common emotional and logistical concerns they experience when their baby has a cleft. As the only book of its kind that addresses clefts to both young children and to parents, this thoughtful book is a must for cleft-affected families.

Fearless, a Book of Poems
By Bradley Harding, illustrated by Dan Gremminger
Now available on Amazon in eBook form. All of us at CCA wish to thank our good friends, author Bradley Harding and illustrator, Dan Gremminger for making this possible. Their generosity and dedication to CCA is heartwarming!

Fearless is an inspiring collection of poems and illustrations created for children with craniofacial challenges. Originally published in 2001 by Children’s Craniofacial Association, the small regional release was immediately embraced by children and families affected by facial difference. This 10th anniversary edition has been redesigned for the eBook platform.

The Adventures of Prickly Pear and Happy Hoglet and Pit Bully 
By Edward Buchanan, MD
These two children’s books are written by Dr. Buchanan, part of the Texas Children’s Hospital Craniofacial Team and help children and parents prepare and empower themselves to cope with bullying or teasing and how to deal with emotions of all kinds.

The Courage to Be Kind
By Jenny Levin and Rena Rosen
In The Courage to Be Kind, authors Jenny Levin and Rena Rosen teach children and parents how to act and respond when they see someone who looks different. Learn with Sam and Ellie as they encounter and interact with several kids in different ways. Ellie is blunt and often offensive. Sam tries to find common ground with each person and provides an example of how to behave.

The dramatization of each difference includes photographs and a list of frequently asked questions so kids and parents can learn about various syndromes together. Through a series of scenarios, The Courage to Be Kind offers a tool to facilitate conversations about kindness and to teach with the art of compassion.

Elmer
By David McKee
David McKee has woven a story about an elephant named Elmer who is the only elephant in the jungle who is patchwork instead of gray. We are invited to share what happens when Elmer gets tired of being different. This is a story about laughing with, instead of at, something different.
Publisher: Lothrop Lee and Shepard Books, 1989

I Like Me
By Nancy Carlson
“Wonderful in its simplicity, here’s a story that will help kids feel good about themselves.” — Boston Globe

It’s Okay to be Different
By Todd Parr
Mary Hassler, mother of Claire, who was born with Apert Syndrome, alerted us to this delightful children’s resource. She says, “The book has vibrant illustrations and very simple words that can be used effectively to generate discussion about all sorts of differences. My 4 and 6 year olds love it.”

Proud of Our Feelings
Beautiful watercolor illustrations and text to help children and caregivers discover, have fun, and be proud of their feelings.
Magination Press
E-mail: [email protected]
www.maginationpress.com

Smile with Simon
By Patricia A. Simon, RN
Simon, a bright, red cardinal, hatched from his shell with a big gap in his beak. The gap made it hard for him to eat. Simon was not strong enough to fly. One day, he accidentally fell out of the nest and couldn’t get back to his family. Patty discovered the little bird and realized he suffered from the same thing as she, a cleft lip. A story of friendship, love, acceptance, and kindness, this playful picture book for children shares the importance a smile has on others. It teaches a powerful lesson-despite people’s differences, we are alike and beautiful.

You Are Special
By Max Lucado
Every day the small wooden people called Wemmicks do the same thing: stick either gold stars or gray dots on one another. The pretty ones with smooth wood and fine paint, as well as the talented ones, always get stars. But the ones like Punchinello who aren’t as talented, or have chipped paint, get ugly gray dots. In this heartwarming children’s tale from bestselling author Max Lucado, Eli the woodcarver helps Punchinello understand how special he is–no matter what other Wemmicks may think. It’s a vital message for children everywhere: Regardless of how the world evaluates them, God cherishes each of them, just as they are.

How I Learned to Rock My Life: The Peter Dankelson Story
Peter Dankelson’s story is a reminder that circumstances don’t define your life; how you react to them does. You will be inspired by how Peter overcomes adversity with a positive attitude and a loving family. You will be motivated to choose courage over fear, embrace what makes you different, and reflect on what’s important in your life. Readers will battle with Peter through his thirty-six surgeries, laugh with him as he searches for an ear store, and share in his excitement when he takes the stage with Buckcherry, Jared James Nichols, and others. Over half a million social media followers have found inspiration from Pete’s Diary, a company inspired by Peter’s life. This book is both Peter’s story and the journey of how Pete’s Diary evolved from his birth in 2000 to his career as a guitar player.

Normal: One Kid’s Extraordinary Journey
Magdalena and Nathaniel Newman
Who is to say what this word means? For Magda Newman, it was a goal. She wanted her son Nathaniel to be able to play on the playground, swim at the beach, enjoy the moments his friends took for granted. But Nathaniel’s severe Treacher Collins syndrome–a craniofacial condition–meant that other concerns came first. Could he eat without the aid of a gastrointestinal tube? Could he hear? Would he ever be able to breathe effortlessly? But Nathaniel looks at “normal” from a completely different perspective. In this uplifting and humorous memoir that includes black-and-white comic illustrations, mother and son tell the story of his growing up–from facing sixty-seven surgeries before the age of fifteen, to making friends, moving across the country, and persevering through hardships. How they tackle extraordinary circumstances with love and resilience is a true testament to Magda and Nathaniel’s family, and to families everywhere who quietly but courageously persist.

Diary of a Beautiful Disaster
By Kristin Bartzokis
Born with Treacher Collins syndrome, a facial abnormality, Kristin learned at an early age the importance of strength–strength when confronted with multiple surgeries, strength when confronted with stares and questions, and strength when confronted with the constant knowledge that you will never look, or be, like everyone else.

Kristin Bartzokis’ life story is one of achievement and inspiration, an example of an unbreakable spirit and unwavering fortitude. No matter what life has thrown at Kristin, she has turned challenges into triumphs and used obstacles as stepping stones.

Diary of a Beautiful Disaster empowers readers to embrace their own uniqueness and boldly go forth into the world being exactly who they are. Kristin reminds us that although life can be complicated and messy, it is always, above all, beautiful.

Wonder
By R.J. Palacio
Wonder is the story of August (Auggie) Pullman, born with a facial difference that prevented him from going to a mainstream school—until now. He’s about to enter 5th grade at Beecher Prep, and if you’ve ever been the new kid, then you know how hard that can be. The thing is Auggie’s just an ordinary kid, with an extraordinary face. But can he convince his new classmates that he’s just like them, despite appearances?
You can order a special edition copy of Wonder from the CCA webstore or apply for a discount rate for bulk purchase by contacting the office.

Ride High Pineapple
By Jenny Woolsley
Apart from having a face that is different, Issy is like many other teenagers. She experiences friendship ups and downs, a secret crush, and bouts of anxiety. Issy is also great at drawing and skateboarding.

Written as a raw, truthful, journal, follow Issy in Ride High Pineapple, to find out how she uses the analogy of a pineapple, her friends, and her skateboarding, to overcome the adversities in her life.

Not All Heroes Wear Capes
The incredible story of how one young man found happiness by embracing his differences
Jono Lancaster
Jono Lancaster was born with Treacher Collins Syndrome – a condition that affects facial appearence – and at only two weeks old, he found himself in foster care. In his remarkable story, Jono shares the highs and lows of his journey and how he turned his differences into his greatest strengths.

Inspirational, empowering and moving – this is an extraordinary memoir with a powerful message: you are strong enough to become your own hero. (Cape optional.)

How I Learned to Rock My Life: The Peter Dankelson Story
Peter Dankelson’s story is a reminder that circumstances don’t define your life; how you react to them does. You will be inspired by how Peter overcomes adversity with a positive attitude and a loving family. You will be motivated to choose courage over fear, embrace what makes you different, and reflect on what’s important in your life. Readers will battle with Peter through his thirty-six surgeries, laugh with him as he searches for an ear store, and share in his excitement when he takes the stage with Buckcherry, Jared James Nichols, and others. Over half a million social media followers have found inspiration from Pete’s Diary, a company inspired by Peter’s life. This book is both Peter’s story and the journey of how Pete’s Diary evolved from his birth in 2000 to his career as a guitar player.

I’ve Just Seen a Face: A Practical and Emotional Guide for Parents of Children Born with Cleft Lip and Palate, Year One and Beyond
By Amy Mendillo, MPP
Hearing the news of a baby’s cleft lip and palate can feel overwhelming for a parent. Amy Mendillo, health writer and cleft parent, has been there. Now, she has produced the most comprehensive guide ever written for parents of children born with clefts. 

Based on extensive interviews with fellow parents and cleft-team pros—plus exhaustive research from medical literature—I’ve Just Seen a Face (named after the Beatles song) contains essential medical information, emotional insights, and insiders’ tips to help parents with countless decisions, big and small, during the intense first year of treatment and beyond. It is also full of personable stories that will help parents feel more supported and less alone.

Normal: A Mother and Her Beautiful Son
Magdalena Newman
For Magda Newman, normal was a goal—she wanted her son Nathaniel to be able to play on the playground, swim at the beach, enjoy the moments of childhood that are often taken for granted. But Nathaniel’s severe Treacher Collins syndrome—a craniofacial condition—meant that other concerns came first. Could he eat without the aid of a gastrointestinal tube? Could he hear? Would he ever be able to breathe effortlessly?

In this moving memoir, Newman, with the help of her son, tells the story of raising Nathaniel, from the shock she and her husband faced when he was born, to the inspiration of Nathaniel’s own strength and quirky humor. All this while also facing both non-Hodgkins and Hodgkins lymphoma diagnoses of her own. This uplifting story of a family tackling complex and terrifying circumstances with love and resilience is a true testament to Magda and her family, and to families everywhere who quietly but courageously persist.

Diary of a Beautiful Disaster
By Kristin Bartzokis
Born with Treacher Collins syndrome, a facial abnormality, Kristin learned at an early age the importance of strength–strength when confronted with multiple surgeries, strength when confronted with stares and questions, and strength when confronted with the constant knowledge that you will never look, or be, like everyone else.

Kristin Bartzokis’ life story is one of achievement and inspiration, an example of an unbreakable spirit and unwavering fortitude. No matter what life has thrown at Kristin, she has turned challenges into triumphs and used obstacles as stepping stones.

Diary of a Beautiful Disaster empowers readers to embrace their own uniqueness and boldly go forth into the world being exactly who they are. Kristin reminds us that although life can be complicated and messy, it is always, above all, beautiful.

Not All Heroes Wear Capes
The incredible story of how one young man found happiness by embracing his differences
Jono Lancaster
Jono Lancaster was born with Treacher Collins Syndrome – a condition that affects facial appearence – and at only two weeks old, he found himself in foster care. In his remarkable story, Jono shares the highs and lows of his journey and how he turned his differences into his greatest strengths.

Inspirational, empowering and moving – this is an extraordinary memoir with a powerful message: you are strong enough to become your own hero. (Cape optional.)

Facial Shift
By Dawn Shaw
Your face, and your life, has been radically altered. Accident, military injury, medical condition…the result is the same. You are now having to confront the world with a “different” face, and understandably this has wrecked your self-image and undermined your confidence, leaving you with a thousand questions and concerns including:
•What should I do when people stare at me?
•What are my medical options?
•Wouldn’t it be easier if I just stayed home and didn’t go anywhere?
•And most significantly, How will this physical change affect current and future relationships?
•Will anyone ever be able to love me?
In Facial Shift, author Dawn Shaw addresses those questions and more. Dawn was born with a rare tumor, the removal of which left her face half-paralyzed. She has lived her entire life, nearly half a century, with a different face, yet has been able to lead a happy and productive life. She doesn’t allow her different face to stop her from interacting with the world, and neither should you. A practical, but empathetic book for those grappling with a facial difference.

Our Altered Life
By Charlene Beswick
After a healthy twin pregnancy, Charlene and Mark were shocked to be told that one of their boys had been born with half of his face undeveloped. In seconds, the happy family future they had been planning disintegrated into turmoil and uncertainty.

Laugh out loud funny in places, heart-wrenchingly sad in others, and refreshingly honest at all times, Our Altered Life is Charlene’s wonderful account of how she struggled to forgive herself and bond with a baby she didn’t expect. Follow her transition through grief and anger, challenges and triumphs, loss and acceptance, to love for the life she has now with two children she wouldn’t change for the world.

Ugly
By Robert Hoge
When Robert Hoge was born, he had a tumor the size of a tennis ball in the middle of his face and short, twisted legs. Surgeons removed the tumor and made him a new nose from one of his toes. Amazingly, he survived—with a face that would never be the same.
This poignant memoir about overcoming bullying and thriving with disabilities shows that what makes us “ugly” also makes us who we are.

The Extra Hole
Jennifer Moné, Ph.D., PLLC
Parents of a baby born with a cleft grapple with balancing love and care for their new baby AND can struggle with the emotional toll of what it’s like to have a child with a cleft. This book addresses several areas families face when a cleft is present while enticing viewers with its beautiful illustrations. In developmentally friendly language, the information helps babies and their young siblings know what to expect (a cleft is called an “extra hole”) and the book also assists parents with the common emotional and logistical concerns they experience when their baby has a cleft. As the only book of its kind that addresses clefts to both young children and to parents, this thoughtful book is a must for cleft-affected families.

Pacer Center National Bullying Prevention
Founded in 2006, PACER’s National Bullying Prevention Center actively leads social change, so that bullying is no longer considered an accepted childhood rite of passage. PACER provides innovative resources for students, parents, educators, and others, and recognizes bullying as a serious community issue that impacts education, physical and emotional health, and the safety and well-being of students.

#ChooseKind
Choose Kind is a national movement inspired by R.J. Palacio’s debut novel, Wonder. Teaching students to be accepting of differences and choosing to act kind toward others is a powerful lesson that will stay with these kids throughout their lives.

Beyond Differences’ No One Eats Alone
No One Eats Alone, Beyond Differences’ most popular program, is a stand-alone event that takes place during lunch at school, including curriculum that can be used before or after the day. During your event, students make a difference on their own middle school campus by making sure that everyone is included at lunch and students sit with new friends and classmates.

Beyond Differences is carrying a simple message to cities across this nation: We believe that a new day is dawning. A new day in which all kids feel included, valued and accepted by their peers. At Beyond Differences we are dedicated to helping teens and schools make social inclusion the new reality.

Real Food Blends
Originally inspired by their young tube-fed son, AJ, who is now the company’s “Chief Inspiration Officer,” and a belief that we all deserve real food, Julie and Tony Bombacino sought to create a company that provided easy access to 100% real food meals and nutritional variety to tube-fed people and their families, at home or on the go.

Years later and with well over 1 million meals sold, you will still only find 100% real food in our meals. No corn syrup, preservatives or synthetic additives/fillers – just a variety of simple real ingredients to nourish your body and soul.

EazyHold
The EazyHold ® universal cuff grip assist is an affordable general use strap that helps people accomplish daily living activities independently despite physical conditions or disabilities impacting grip strength. The flexible universal cuffs attach securely to get a grip on handles of utensils, tools, toys and more! Our adaptable assistive device is made of soft, flexible food-grade silicone, hypoallergenic and latex free. Eazy to use, Eazy to clean and Eazy on the hands!

Medi-Kid Pediatric Limb Immobilizers
Custom fit, 100% cotton controls for arm or leg movement after surgery or injury. Designed and patented by parent whose son had a cleft, they come in adult and children’s sizes. Can be worn over or under clothing. The smaller ones come with thumb hole or without! Can even be comfort for an x-ray.

NutriSqueeze
The NutriSqueeze pouches are disposable stand-up pouches for easy storage and serving of shakes, purees, and drinks. When cups and straws wont work, NutriSqueeze pouches are easy to use and can be taken anywhere. A great alternative to feeding syringes.

Reflo Training Cup
The Reflo Smart Cup ™ is a training cup. It’s a smart alternative to sippy cups and a great transitional tool for your children to learn to drink from an open cup. No buttons or other complicated mechanisms to operate. It’s as easy as drinking from any ordinary cup without the worry of big spills due to the patented Reflo ™ insert that controls the flow of beverage anywhere along the cup’s rim and at virtually any angle. BPA-free, phthalate-free and dishwasher safe, the Reflo Smart Cup ™ is designed for safety and hygiene with no moving parts to trap dirt and germs.

Recommended for all ages as a smart alternative to “sippy cups” which have been associated with dental and speech problems.

Face Equality International
‘Face Equality is a Human Right’
Discrimination and indignities are a daily occurrence for the facial difference community. This is a hidden community that has continued to be marginalised, abused and neglected, throughout history. To this day we do not believe the injustice experienced by this unique community has been adequately recognised or addressed by global society.

Beyond Differences
Every student should feel accepted, included, and valued by their peers. Beyond Differences works directly with middle and high school students, on campuses and online, to help them promote social inclusivity within their schools.

Changing Faces UK
https://www.changingfaces.org.uk/
We are here for everyone with a scar, mark or condition on their face or body.

Changing the Face of Beauty
Changing the Face of Beauty is an approved 501(c)3 nonprofit corporation that is committed to equal representation of people with disabilities in advertising and media worldwide. Changing the Face of Beauty empowers people living with disabilities by advocating for inclusive imagery, thus changing perceptions and igniting futures in the media and advertising industries.

Check our YouTube Library for interviews with people from all walks of life who are living, working, and thriving with a facial difference.
https://www.youtube.com/@ChildrensCraniofacia

Peter Dankelson
Peter Dankelson was born 10 weeks premature weighing less than three pounds. He had over 10 serious birth defects resulting in a diagnosis of Goldenhar Syndrome also known as Oculo-Auriculo-Vertebral Syndrome (OAVS). Peter required a tracheostomy and feeding tube, was in NICU for almost four months, and has had 28 surgeries. He is a sophomore at Libertyville High School and enjoys playing electric guitar, gaming on Xbox, and pranking students with his fake ear.

Because of his life experiences, Peter deeply related to the book Wonder by R.J. Palacio about a boy with a facial difference. Peter speaks with students after they read the book, comparing his real-life story it to the fictional character in Wonder. Since 2012, Peter has promoted #ChooseKIND at schools around the country and connected with over 15,000 students. He is the recipient of the 2016 Teen Advocacy Champion of Hope Award by Global Genes Alliance (GlobalGenes.org).

Peter was a Patient Ambassador for Children’s Hospital of Michigan from 2010-2015. He served on the Youth Advisory Council, conducted television interviews, and spoke at faculty meetings. Peter has also advocated in Washington D.C. on behalf of Children’s Hospital Association (childrenshospitals.org).
​
Peter is available to speak on site or live video. His motto is “Be comfortable with who you are so that others will be comfortable around you.” Peter uses humor to discuss his differences, encouraging students to ask questions and embrace diversity.

Carly Findlay
Carly Findlay is a blogger, writer, speaker and appearance activist. She challenges people’s thinking about what it’s like to have a visibly different appearance, living with Ichthyosis.

Jono Lancaster
Rohan Murphy is a nationally recognized youthspeaker that has spoken in over 40 states. Rohan, who lost his legs at birth, started to wrestle his freshman year of high school. After a successful high school wrestling career he went on to wrestle at Penn State University. In addition to wrestling, Rohan Murphy is also an accomplished powerlifter, competing in international competitions all over the world representing the USA.

J.R. Martinez
Full of Heart: My Story of Survival, Strength, and Spirit
In 2003, nineteen-year-old Private J.R. Martinez was on a routine patrol when the Humvee he was driving hit an antitank mine in Iraq, resulting in severe injuries and burns on his face and more than one-third of his body. Out of that tragedy came an improbable journey of inspiration, motivation, and dreams come true. In Full of Heart, Martinez shares his story in intimate detail, from his upbringing in the American South and his time in the Army to his recovery and the indomitable spirit that has made him an inspiration to countless fans.

Rohan Murphy
Rohan Murphy is a nationally recognized youthspeaker that has spoken in over 40 states. Rohan, who lost his legs at birth, started to wrestle his freshman year of high school. After a successful high school wrestling career he went on to wrestle at Penn State University. In addition to wrestling, Rohan Murphy is also an accomplished powerlifter, competing in international competitions all over the world representing the USA.

Turia Pitt
Turia Pitt is one of Australia’s most admired and widely recognized people. At 24, Turia was an ex-model, fitness junkie and successful mining engineer whose life was turned upside down when she became trapped in a grass fire while competing in a 100km ultramarathon. She was choppered out of the remote desert barely alive, with full thickness burns to 65 per cent of her body. Renowned for her pure grit, indomitable spirit and passion for humanitarian work, Turia has gone on to thrive in the ultimate story of triumph over adversity.

David Roche
A spokesperson for all with facial differences! For a video to preview his message or come to your own community, contact David Roche at: https://www.davidroche.com/

Lizzie Velasquez
Lizzie Velasquez is a global motivational speaker, anti-bullying activist, social media personality, and author. Lizzie was born with a rare syndrome. At this time there are only 2 other people in the world that are known to be living with this rare syndrome. In December 2013, she took the stage at the inaugural TEDx AustinWomen, and gave a talk titled “How Do You Define Yourself?” that has garnered over 13 million views across the web. Her story has been featured on Katie Couric, The Today Show, The View, Huffington Post, Associated Press, AOL, MSN, and Yahoo! among many other national and international media outlets.

Patient Advocate Foundation
Patient Advocate Foundation is a national 501 (c)(3) non-profit organization which provides professional case management services to Americans with chronic, life threatening and debilitating illnesses.

PAF case managers serve as active liaisons between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters as they relate to their diagnosis also assisted by doctors and healthcare attorneys.

Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

The Individualized Education Program (IEP) IS THE KEY
Children’s Craniofacial Association 2011 Symposium Presenter: Paula Guzzo
click here to download 

E-Book from Devoted Journey: Preparing for the IEP Meeting-A Parent’s Guide to the Agenda by Lisa Brown, CCA Parent and Educator (must sign up for ebook)

“Beyond the Face is a Heart” Skit
Peter uses a humorous skit to make his schoolmates feel comfortable to talk about his facial difference

Individualized Education Program (IEP) articles:
Understanding Article 7

Transition IEP Chart

Written Opinions: A How-To Manual

Parent Tip Sheet

First Day of School & Surgery Letters to Teachers & Students

Sample Letters

BOOKS