Friday, February 24, 2017

From the Bench with Francis... to the Open Seas!

by Francis Smith

In August 2016 I inaugurated the Fabulous Faces at Sea Craniofacial Cruise as a way for those of us with craniofacial differences to get together, fellowship, support one another, and participate together in group-specific activities such as a seminar, ice cream social, and a group shore excursion. I am continuing this tradition in 2018 with the second Fabulous Faces at Sea cruise. The 2018 cruise is aimed more at adults with craniofacial conditions, and will provide an opportunity for us adults to enjoy one another and participate in activities geared for our group. Families are already well served by the CCA family retreat, and this is an opportunity aimed at us "alumni" of the craniofacial community. The 2018 cruise will therefore provide group-specific activities aimed at adults, such as seminars and social activities together on the ship as well as a group-specific shore excursion on one of the Western Caribbean port stops.

Thursday, February 23, 2017

#ThankfulThursday: Stoddard Elementary School Capistrano, California Says Thank You!

A big #ThankfulThursday shout out to the sixth grade classes of Teresa Gonzalez, Claudia Estigoy, Chris Lock of the Stoddard Elementary School in the Capistrano Unified School District for their generous donation to Children's Craniofacial Association. 

Peter Dankelson and his Mom and Board Member, Dede Dankelson, visited the school in early February to give a presentation about what is like to look different, how to overcome challenges in daily life, but most importantly, how to be kind to one another. The Stoddard Elementary school took the #ChooseKind challenge seriously and collected $175 to donate to the CCA. We are very grateful for their efforts. 

We hope they continue to be kind to one another, stand up to bullies, and go forth and make this world a better place. 

Way to go, guys!

Wednesday, February 22, 2017

Wonder Wednesday: Peter Dankelson Shows Cali How to #ChooseKind

Ladera Ranch Middle School 
Peter and his mother Dede Dankelson have been traveling across the great state of California spreading the word about the #ChooseKind movement, acceptance, and, yes you guessed it, the book, Wonder, too. They have stopped at over 10 schools up and down the West Coast presenting about Peter's differences within the context of R.J. Palacio's which many of the school's students read. Students had the opportunity to ask Peter questions about his experiences. In these clips, he provides stories and advice about bullying:



Other students asked questions about just being a teenager, like "what is your favorite video game?" or "when did your addiction to Star Wars begin?" Everything was fair game and Peter answered all their questions with the grace and ease of a professional.

This had to have been an incredible experience for the students and for the Dankelson's, too. Truly a trip to remember. Thank you Dede and Peter for all your hard work, your family's (that means you too Dad and Jacob Dankelson) unwavering dedication encouraging us all to #ChooseKind.

Happy #WonderWednesday everyone!

Tuesday, February 21, 2017

Ohio State Survey Focuses on Quality of Life for Those with Rare Disease

AWaRDS Study: Adults with Rare Disorders Support

Kathleeen Bogart, a psychologist at Oregon State University has partnered with the National Organization for Rare Disorders to survey the psychological and social needs of those affected by rare diseases. You can help by sharing your experiences by answering the questions in the survey.
Click this link to gain access. The survey will be available until April 1, 2017.

AWaRDS Study: Adults with Rare Disorders Support
What is the study about?
In partnership with the National Organization for Rare Disorders, this will be the first large-scale study about the information and psychosocial support needs of people living with rare disorders. The purpose of this research study is to assess these needs, from the perspectives of people with a variety of rare disorders, to find similarities and differences across disorders. To ensure that results reflect the diversity of the rare disease community, it is crucial that as many people living with a rare disease as possible take part. 
What would I do as a study participant?
There are two ways to participate. 1) You can follow this link to take a 40-minute online survey about your experiences with and information and support needs related to your rare disorder (paper forms are available by request). If it is physically difficult to respond, someone may enter your responses for you. 2) During the survey, you can opt to sign up for a second study, which involves an online focus group about the information and psychosocial support needs with others with rare disorders. You must participate in the survey in order to be eligible for the focus group, but the focus group study is not required to participate in the survey. You will be paid $20 for participating in the focus group.

Who is eligible to participate?
You must be an adult or the age of majority in your state, be able to communicate in English, and have a rare diseaseor disorder or undiagnosed rare condition. Caregivers who do not have a rare disorder themselves are NOT eligible to participate at this time. A disease is generally considered rare if it affects fewer than 200,000 affected individuals in theUnited States or fewer than 1 in 2,000 in Europe. A list of rare diseases can be found here: gov/diseases/browse-by-first-l etter. Because rare disorders are discovered and prevalence estimates change frequently, you may participate even if your disorder does not appear on the list.

What will we do with study findings?
We will send a summary of results to all participants. To help NORD, rare disorder organizations, and healthcare professions meet the needs of people with rare disorders, results will be shared through reports, conference presentations, scientific publications.

Who are the researchers?
Kathleen Bogart, PhD, Principal Investigator, Assistant Professor of Psychology at Oregon State University, studies psychosocial needs of people with rare disorders and has a rare disorder herself. She also serves on the Board of Directors of a NORD member organization. Contact her at Kathleen.bogart@oregonstate.ed u or 541-737-1357.
Veronica Irvin, PhD, MPH, Co-Investigator, is Assistant Professor of Public Health at OSU. She has experience analyzing information offered by support organizations.

Help make this the largest study on living with a rare disorder! Please share this with others who may be interested in participating.

Monday, February 20, 2017

Letter To A Mother of Child Born with Treacher Collins Syndrome

By Kristin Bartzokis

Kristin Bartzokis is an athlete, artist, and writer.  She was born with Treacher Collins syndrome and documents her life experiences in her blog Diary of a Beautiful Disaster.  Her first book, also titled Diary of a Beautiful Disaster, releases March 21, 2017.  You can preorder it here

This letter goes out to any mother, who has just given birth, and is forced to make the instantaneous decision to keep an imperfect child.  It was inspired by an article I read about a biological mother deciding to keep her baby born with Treacher Collins Syndrome instead of giving her up for adoption as originally planned.  This left me wondering how many babies have been born imperfect and unwanted.  I was born to, and raised by, very loving parents, but I recognize that not everyone is as lucky.  In some cases, biological parents see an abnormality as a burden and decide to place their newborn baby up for adoption.  In other cases, soon-to-be adoptive parents back out of the adoption for the very same reason.  These instances might not be regular occurrences, but still, they happen.  The article I read reiterated how incredibly lucky I was to have my family, and my heart hurt when I realized that not all children grow up with the same kind of unconditional love that I enjoyed.  I decided I needed to use my strongest voice, my writing, to illustrate the importance of keeping, raising, and loving a baby born with imperfections.  (I think it is important to note that I do recognize that not everybody has the financial stability needed to care for, or raise, a child with a craniofacial abnormality.  This letter was not directed at those families, but rather the ones who simply didn’t want an imperfect child.)

To the mother of any baby abandoned by her biological or adoptive parents, because she was born with Treacher Collins Syndrome:

I’d like to say thank you for keeping this baby when the other parents hightailed it at the first sign of abnormality. Treacher Collins Syndrome is not a curse. It may turn your reality upside down a time or two, and bring you moments of heartbreak and tears, but what life doesn’t promise this?

In truth, this child is much better off with you than with the potential family that abandoned her because of her looks. By deciding to keep this child with her obvious anomaly, it shows you embody compassion and strength. Only the weak would choose to cower in fear of the imperfect. Your baby does not need such weakness; she needs your strength. She needs to grow up believing in endless possibilities. She needs to be raised in an environment that won’t judge her with one glance. She needs to learn never to make excuses for why she can’t do something, because there will never be a valid reason. Her facial anomaly creates a physical difference, but her heart, mind, and soul offer complete normalcy.

You will endure some trying times. Should you choose the path of reconstructive surgeries, your heart will break for her, but don’t ever leave her side. She’ll need your strength. She’ll feed off of it. She’ll embody it. Surgeries will swiftly become distant memories, and 33 years later you’ll be penning a letter to some complete stranger who chose to accept Treacher Collins with open arms. Thank you for the reminder that my flaws are only flaws if I see them as such.

This is my advice for you: be the best parent you can be, treat your daughter as if she were any other child, and help her grow into the same compassionate individual who would lovingly welcome an abandoned infant.

Treacher Collins Syndrome is not the end-all-be-all. Trust me, I know first hand. Like me, your daughter is fully capable of living an extraordinary life! Never doubt this. Treacher Collins may not be everyone’s normal, but it is now your normal. Welcome it. Embrace it. Own it. And never quit helping your child show the world the beauty of a facial abnormality.

All the best,

Editor's Note: This is one article which highlights the situation the author mentions: