Today is #RareDiseaseDay. Learn more about the organization that created the day and how you can help raise awareness. Do you have a rare disease? What is it and how can you raise awareness about it in your community?
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
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!
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.
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 raredisease community, it is crucial that as many people living with a raredisease as possible take part.
What would I do as a study participant?
There are two ways to participate. 1) You can follow this link http://bit.ly/2hWZLr2 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 rarediseaseor 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: https://rarediseases.info.nih. 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.email@example.com 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.
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.
The Charity Buzz Auction items to help benefit the Children's Craniofacial Association is days away from ending. You have the opportunity to bid on concert tickets with a meet-and-greet with Kenny Rogers at one of four dates during his 2017 tour.
There are also opportunities to see Donny and Marie Osmond and American Idol's own Crystal Bowersox in concert with meet and greet opportunities. Learn more about how you can bid on these items to benefit Children's Craniofacial Association by going to our CharityBuzz page. CharityBuzz brings together hundreds of the world's most acclaimed celebrities, inspiring luminaries and beloved brands to give you unforgettable access to your passions. Plus, you can feel good knowing that every winning bid supports an incredible cause.
We have been working with the team at Texas Children's Hospital to bring you some FAQs as part of our effort to provide relevant, timely, and much-needed medical information to you. We believe that helping patients and their families find and access the right craniofacial team is an essential service that we provide. Today's FAQs concern babies with plagiocephaly who wear a helmet.
From the doctor: Our patient families have helped generateFrequently Asked Questions about cranial orthotic helmets. Some babies are in helmets for positional plagiocephaly, while others are in helmets after endoscopic craniosynostosis surgery. We prepared some typical answers to helmet FAQ's. Many families have worked with Jim Brookshier CPO LPO (orthotist), who has been taking care of children's helmet and head shape needs in Texas for over 10 years. Jim has partnered up with me to write these FAQ sheets. Of course, this information cannot substitute for regular visits with your orthotist and your physician to avoid problems and to work towards the best outcomes possible.
We are featuring a new item in our care packages, EazyHold. What is it? I'm so glad you asked. EazyHold silicone is a "universal cuff assistive devices are affordable general use straps that help people accomplish daily living activities independently despite physical conditions" and those that need some enhancement to their grip strength.
Different sizes accomodate varying hand sizes from infant, child, teen, all the way to adult. EazyHold silicone cuffs comes in a variety of different colors, too. Eazyhold can be used to eat, brush teeth, color, use your smartphone, write, and so much more.
You can even play with your action figures!
There is even an EazyHold product made specifically for assistance with sippy cups and bottles. Staying hydrated was never more colorful, fun, and well, easy.
We love Eazyhold and think you will too. Dishwasher safe, easy to clean, and keep free from germs. The silicone cuffs allow your child and friends to do everyday, daily tasks. Eazyhold is truly transformative. You can spread your love for Eazyhold by donating money toward purchasing one for a person in need. Learn more about the the product and the donation in the program in this video.
There are only 21 hours left to bid on the three incredible items that appear on the Bidding For Good website. Bid on an 11 x 14 Family Portrait, a Ricky Martin autographed CD, or an autographed Lady Gaga CD featuring duets with Tony Bennett.
BiddingForGood is a charitable e-commerce company that connects fundraisers, cause-conscious shoppers, and socially responsible businesses.
Hi, my name is Seth from Canton, Ohio. I am the oldest of my
siblings and I turned 14 on December 27th, 2016. I am in 7th grade this year
and I like school. My favorite part of the day is breakfast and lunch and my
favorite subject is math. I just had a hand surgery in October to straighten my
fingers... it was my 32nd surgery. I will be getting braces on my teeth
soon. I don't have any other surgeries planned anytime soon. I really like to
read and like to play video games. I enjoy taking care of my dog, Lillie, and my
cat, Tinkerbell. I also like taking care of our chickens, Henny and Penny. I
collect the eggs and feed them.
Hi, my name is Gabriel Swihart. I am 11 years old and in 5th
grade. I am Seth's younger brother. This year I am playing trumpet in the band
and playing basketball in middle school. I am also a second-year Webelo in
Scouts. I really like camping, baking and all the activities we do to earn
badges. Right now I have around 17 badges. The most important thing in my life
to me is my relationship with God and I try my best to be a good person but I am not perfect. Even though Seth may look different to others, he is my brother
and I love him just the way he is. We should always treat people with kindness.
Hi, my name is Sydney and I'm Seth Swihart's sister. I am
10 years old and in the 5th grade. I am the youngest of my siblings. This
summer, I was able to attend a week-long horse camp. I stayed over
night all week and learned about horses. I groomed, fed, saddled and learned
how to ride. I am saving my money so I can attend a more in-depth program
next year! This year in school I joined band. I play percussion as a
drummer; it is a lot of fun. I also enjoy singing and theatre! When I grow up, I would like to rescue animals and maybe be an animal cop to help protect them.
Being Seth's sister has taught me that kindness is very important and everyone
needs to be treated with love. It makes me sad when people are not nice to him, so kindness is very important to me.
A new article in The Cleft Palate-Craniofacial Journal illustrates the inequality of access of children to critical cleft lip/palate surgery due to minority status.
There are certain ages or life stages at which repair of cleft lip and palate and subsequent follow-up procedures need to be done to ensure good oral and dental function and health, according to published guidelines . Primary cleft repair takes place within the first 12-18 months of life, and follow-up surgeries should be performed according to the stages of development of the palate and other oral structures. A cleft in the lip and/or palate can result in a gap in the alveolus, or bony structure that forms the upper dental arch. One critical surgery is alveolar bone grafting (ABG) surgery, in which bone is taken from the pelvis (specifically, from the iliac crest) and put into the alveolar gap resulting from the cleft, to close the gap. ABG surgery is typically performed at age 8 or 9, during transition from the deciduous dentition ("baby teeth") to permanent dentition ("adult teeth"). This surgery is necessary in order to stabilize the dental arch, provide bony support for permanent teeth and allow for complete oral rehabilitation going forth. Without this surgery, or if it is delayed, complete repair of the cleft is impossible, the dental arch is unstable and cannot support permanent teeth, and oral rehabilitation is compromised.
Unfortunately, children in minority racial groups (particularly black and Hispanic) and who are on public medical insurance (such as Medicaid and state Title V plans) have less access to health care than those in non-minority groups and insured privately. This includes children with cleft lip and/or palate. Prior research has found such a delay in cleft palate repair and follow-up surgeries in children in minority groups and who are on public insurance plans.
Researchers at the Children's Hospital of Philadelphia (CHOP) did a 13-year retrospective chart study of 233 patients who underwent ABG surgery at CHOP to determine when the children had the surgery. The researchers included only children with nonsyndromic clefts (not part of any syndrome) who had prior preliminary cleft palate repair at CHOP and stayed on with the same team over the years for the ABG surgery; those who left the team before ABG were excluded. Also, this study is the experience of one institution, and not necessary reflective of the general experience among other hospitals. On average, the age at which ABG was done was 8 years. However, Caucasian and Asian children underwent ABG approximately one year earlier than their African-American and Hispanic peers. Further, the researchers found that most of the patients examined in the study who had ABG surgery were white males as well as on Asian children who were adopted into white families and got timely cleft care once they entered the healthcare system. In this study, insurance status played no significant role--the type of insurance did not affect the timing of surgery, and less than 20% of patients were on public insurance.
From their results, the team concluded that there are significant delays and disparities in timely ABG surgery among black and Hispanic children compared to their white and Asian peers. This demonstrates a need to increase minority access to good healthcare and treatment for cleft lip and palate in a timely fashion.
Today on the blog, we are expanding our "Ask the Doctor" series!
We have been working with the team at Texas Children's Hospital to bring you some FAQs as part of our effort to provide relevant, timely, and much-needed medical information to you. We believe that helping patients and their families find and access the right craniofacial team is an essential service that we provide. Today's FAQs concern babies who wear helmets after craniosynostosis surgery and next week, we'll post the FAQs for plagiocephaly helmet wear.
From the doctor: Our patient families have helped generateFrequently Asked Questions
about cranial orthotic helmets. Some babies are in helmets for
positional plagiocephaly, while others are in helmets after endoscopic
craniosynostosis surgery. We prepared some typical answers to helmet
FAQ's. Many families have worked with Jim Brookshier CPO LPO
(orthotist), who has been taking care of children's helmet and head
shape needs in Texas for over 10 years. Jim has partnered up with me to
write these FAQ sheets. Of course, this information cannot substitute
for regular visits with your orthotist and your physician to avoid
problems and to work towards the best outcomes possible.
Bring #NoOneEatsAloneDay to your school on Friday, February 10, 2017. The special day is brought to you by the Beyond Differences organization for middle schools to encourage its student population to make sure everyone is accepted at lunchtime. No one is left without someone to sit with during what can be one of the most anxiety-filled parts of the day.
Sign the pledge and let your school's student body know about this day filled with ways to show kindness and acceptance. Learn more: http://www.nooneeatsalone.org/
Here's a video that shares the story behind the day.
This is a repost of a blog entry from September 23, 2015. It resonated so much that we felt we should post it one more time! The post was originally found on one of the craniosynostosis groups on Facebook, and graciously, the author, Xanthe Faulkner, agreed to let me share it on our blog. I believe it's a succinct and beautiful peek into the lives our amazing cranio moms and dads, and a great example of why family networking is so critically important and part of the work we do at CCA Kids.
Why we cranio families are who we are...
So Helmetbaby here is in daycare. And the day he started, 4 months ago, I looked at a boy in his class and thought "Saggital. For sure." But you know how it is - I never crossed paths with his parents, don't know the family, maybe he's already being followed, etc... But we're very public about our son's journey, so all the staff know us and the details of our little guy's condition and journey.
So this morning I was carrying my son across the parking lot towards the school. And a woman I don't know calls to me, softly, and comes over. "I need to talk to you," she falters, "I'm so happy you came just now. The teachers said I should, that I could..." And tears well up in her eyes, and I knew right away. With my son cradled in one arm I wrapped my other arm around this stranger and held her tightly. Of course she was the other little boy's mom, and she had gotten CT confirmation of fused saggital and metopic [planes of the anatomy of the skull] the day before. "I'm so upset," she said, soft spoken and shocked, "I never expected. I'm beside myself. I forgot all my groceries in the store yesterday. I'm so distracted and scared, I don't know what to do."
She doesn't have Facebook to get support from you all, she hasn't even met with a neuro[logist] yet, but I gave her my number. We'll have coffee. I told her my son was fine, more than fine, and that while it had been scary, the results were fantastic. That everything will be okay. And guys, I felt so clearly... That we as cranio parents are the only ones that get it. The sudden fear of realizing they will have to cut your child's skull open and piece it back together. The terror of things going wrong. Worries about their little growing brains. The unknown. And I thought about how people who understand first hand are the only ones who seem to bring any comfort sometimes. You can't fake having been there. And once you've been there, you are driven to reach out to others standing in the new fear,
To hug them in the parking lot,
Thank you all for being that for me and so many other families.
Thank you for teaching me how to be that for others. XO.
Join Rare Diseases South Africa, an advocacy group for those living with rare conditions in their effort to raise awareness about Rare Diseases by posting on Instagram.
Each day has a theme or a topic. Take a picture that best reflects that topic in your daily life, share it on Instagram, and tag #RDSA, #RareDiseaseDay2017 #RDSA, and @CCAKids on all social media platforms. A picture speaks volumes about the day-to-day experiences.
This is a fun way to inform others in a positive way. Show your positivity, resiliency, and what it is like to live with your rare disease. Shout it proud! Shout it out loud!
Without further ado, here are the topic suggestions for each day of February. Together, let's make the public #AwareAboutRare
Lady Gaga takes the stage during the Super Bowl halftime show on Sunday to introduce the Born This Way Foundation's Kickoff For Kindness. Gaga and her mother, CynthiaGermanotta, who started the foundation, want everyone to take this opportunityto choose kind and who better to help them than all the kindness warriors at CCA.
Every day presents a number of opportunities, large and small, to be kind to one another. Whether it be donating to one of your favorite non-profit organizations like CCA, or simply holding the door for the person entering the building after you, there is always a way to infuse care for others into our every day lives. Kindness is one of the cornerstones of the Born this Way Foundation founded by Lady Gaga in 2012. Their mission reads, "Born This Way Foundation is committed to supporting the wellness of young people and empowering them to create a kinder and braver world. We achieve this by shining a light on real people, quality research, and authentic partnerships." You can learn more about the work they are doing for children, teens, and adults at this website.
What Can You Do?
There is a number of ways to take action on Super Bowl Sunday on Sunday, February 5, 2017. Here are a few ideas:
Throw a Super Bowl party with a kindness theme.
Collect canned goods, coats, or other clothing to donate to a local homeless shelter or non profit
Organize a day of service for a local charity or non-profit organization
Raise awareness on social media by using the hashtag #KickoffForKindness
Even more suggestions can be found on the Born This Way Foundation's webpage.
Join the virtual party and let kindness reign. Let's all Choose Kind and stay safe this Super Bowl Sunday!
We have a big announcement: After closing out our year end, we have the final totals and YES! We did it with all of your help ... We met our $25K Challenge Match! Thank you so much to everyone who donated, gave, and shared the challenge. That means at the year end, we raised over $50K for CCA Kids. Thank you for helping us get there and continue another year of giving hope to families affected by facial differences. #ThankfulThursday THANK YOU!
R.J. Palacio's book, Wonder, starring Jacob Tremblay and Julia Roberts will be hitting theaters this year. This is a big moment for our craniofacial family. Let's celebrate and throw a movie premiere! I know what you are thinking, "I don't live in Hollywood. How would I know how to plan a premiere party?" Well, not to worry. I have a 5-point plan to help you get ready for the what will be a night to remember
1. Organize A Group Ticket Purchase
Start asking people in your area, region, city, or hospital if they would be willing to buy a block of tickets for their group - think your craniofacial team, your classroom, or your workplace. You could also partner with a local business and ask them donate a portion of the profits from a single day of sales to your Wonder premiere ticket purchase in exchange for hosting the official pre- or post-premiere gathering. Contact friends and family to see if they can help, too, and ask them to invite their friends!
2. Identify and Contact a Local Theater to Host
Find a theater that has an existing group program. Try to utilize that program as a jumping-off point. Most theater managers will be amenable to dedicating a showing to a group. Some require you to buy a block of tickets in advance (think #1), while others will help you set up a presale and a special link.
CCA is working to partner with a large movie theater company. However, the best events come from relationships. If you can establish a program with a theatre manager, you will have the most success.
3. Hold Tight for the Date, Invite, and Advertise Once you have found a theater, make a guest list and start advertising the event and location to people you would like to invite. CCA would be more than happy to help you send blast emails or postcard invites on your behalf to your region. Purchase a small bit of advertising space in the local paper, church bulletin. Let local non-profits interested in healthcare and children know about the premiere party. The official release date has not yet been announced, so stay tuned... we will let you know as soon as it is made public! 4. Ask Someone To Speak Ask your son or daughter if they would like to reflect on their experiences being born with a facial difference. Ask a doctor or other medical professional to talk about the medical and social needs of growing up with a facial difference. Hold a question and answer session to facilitate discussion with the audience, or breakout sessions where movie-goers can discuss the film.
Start approaching potential speakers now, especially if they are medical professionals, so they can save the date for your incredible event. It is never too early to ask... think "Fall" and be on the lookout for the official release date!
5. Local Business Sponsorship Finally, talk to some potential sponsors at print shops and photographers who'd be willing to donate a "press wall banner" or "step and repeat" banner for photo opportunities and a photographer who'd take premiere photos. Ask local medical or pharmaceutical companies to represent at the event and donate money in exchange for sponsorship opportunity ... Have a business in mind? Let us know, because we're happy to help you with the approach. In return for sponsoring your event, you can give them exposure to your audience. If you plan on hosting a party after, ask local restaurants, supermarkets, and cafes if they would be willing to cater the event. Perhaps, a percentage of the sale could go toward paying for the movie premiere party, or to support the work of CCA.
What Are Your Thoughts?
If you are planning a Wonder Premiere, let us know what you are doing to make your event extra special! Is there anything that I missed? Please feel free to comment below or share your ideas via email at contactCCA@ccakids.com.