Sunday, January 21, 2018

#NewsDayTuesday: Illinois Boy Survives and Thrives After Life-Saving Surgery





Photo Credit: 23WIFR 


An inspiring story out of Byron, Illinois about a 1 year old baby born with craniosynostosis. Symptoms did not start until a year into the boy's life.  The doctors in Illinois quickly diagnosed him and performed the life-saving surgery to relieve the pressure in the child's head and allow the brain to continue to grow. Read and watch the video about this brave little guy at the 23WIFR website. 

Learn more about the sign, symptoms, and treatment for craniosynostosis on the Children's Craniofacial Association website.

Wednesday, January 17, 2018

Introducing J.Jaye Van Sickel, Executive Assistant!




J. Jaye has a passion for helping educate the public about craniofacial differences and seeks to help facilitate changing peoples’ attitudes from that of fear, indifference, and bullying to understanding, compassion, social acceptance and friendship. J. Jaye was born in Canada, grew up in Seattle, and received her B.A. in Fine Art from Abilene Christian University in Abilene, TX. She enjoys baking 3D cakes. She also helps her talented husband, Jason, who is a filmmaker, with wardrobe design and art direction. Together, they have two amazingly smart and talented CCA kids, Sophia, and Redding.

Patient Experience Project in Saratoga Springs, NY Hosts "Rare Disease Day at the Movies"






The Patient Experience Project (PEP), a patient-centered communications agency, will host its third annual “Rare Disease Day at the Movies” on February 28, 2018, in Saratoga Springs, New York. The event raises awareness and funds for people living with rare conditions. This year, inspired by Megan Cronin and her family, PEP will feature a special screening of the movie Wonder, based on R.J. Palacio’s book of the same name. Additionally, hundreds of students in several school districts in New York’s Capital Region have participated in a poster contest for the event, depicting the themes of kindness and acceptance in their artwork. All proceeds will benefit the Children’s Craniofacial Association (CCA).

Attn: Issaquah, WA Residents: Boys Basketball Game Raises Awareness and Funds on Jan. 19th





Washington State residents that live in the Issaquah area. Please join the Issaquah Eagles as they take on the Skyline High School basketball team on Friday, January 19th. Take in the game and help the students raise funds for Children's Craniofacial Association at halftime. The school will host a "miracle minute" during halftime featuring stories about and by people affected by craniofacial conditions. Go to the game to participate and raise funds for CCA. Have a great time and do good at the same time. 

Thank you Issaquah High School for taking a "minute" for us!

Personal Essay: On The Outside

By Jenna Ottow


Jenna Ottow was born with Apert Syndrome, a craniofacial birth defect. She lives in Milwaukee, Wisconsin.  She works in the health insurance field coordinating care and advocating for patients’ needs. She  enjoys hiking with her dog, watching the Green Bay Packers, and reading.  Jenna also enjoys socializing, a good glass of white wine, and any reason to find the silver lining.  

Having a craniofacial difference is hard.  I was born with Apert Syndrome which means I was born with most of the bones in my skull, hands, and feet fused together. These bones are still fused today. A craniofacial difference is on the outside, and it’s obvious. All the time.  Sure it can literally  be masked with sunglasses, scarves, surgeries, or hats. These masks are useful to dodge the second looks, gawks, or whispers, but after those layers come off, the wounds, scars, wide set face (for me) are still there, staring back. Apert Syndrome has followed me my entire life. I am almost always the only  person in the room with a physical difference. I stick out like a sore thumb.  I try not to think about it.  It is confusing, lonely, and unsettling.

I’ve learned from a young age that the stares, whispers, and gawks won’t go away.  Ever.  I realized that in order to survive, to make this life of mine habitable, I needed to change my perspective.  For one of my college scholarships, I wrote an essay on a Nathaniel Hawthorne quotation, "Life is full of marbles and mud."  It was hanging on the wall in the classroom where I was supposed to master the art of cooking.  In the essay, I explained that in order to get through the mud, the focus had to be on the marbles.  Always.  Celebrate the marbles in first class style, own the marbles, that way, when mud rears its ugly head, marbles will always have a place.  A place to look forward to.  That’s all.  A lifetime of experience has taught me to barter the marbles to avoid the mud.

A few years ago after a very filling holiday visiting family, I was boarding an airplane with my parents.  My Dad prefers to sit in the exit row.  At 6’3” his legs get squished in almost all modes of transportation.  The exit row on a 747 has more legroom as it serves as the emergency exit, making a 3 hour flight a little more bearable.  That is where we sat on this flight.  My Dad and I on the ends, my Mom in the middle.  Passengers were getting settled, compartments were opening and closing and the telepathic pleas from the parents to overtired children begging for a “tear-and-drama-free” flight hung in the air. Turns out the children would not be providing the tears that evening.  The three of us had just listened to and agreed with the rehearsed statement from the flight attendant explaining the responsibility that comes with sitting in the exit row.  I believe you have to at least be 15 years old to sit in this row, At the time, I was in my mid twenties.  Phones were getting turned off, and smaller carry ons were being shoved under seats. There was a silence, yet we weren’t moving.  A different flight attendant approached our seats with haste.

She leaned over my seat and said to my parents, "She will have to move.  We’re sorry for any inconvenience, but she can’t be here."

Apparently, a judgement was being made based on my physical appearance that I could not handle the duty of sitting in the exit row, despite my previous confirmations.   My parents, not really sure what their role was in this, looked at me, with my mouth agape as I looked at the attendant.

"You’re talking about me?" I asked her.  The attendant nodded, still looking at my parents. "First of all, I’m right here.  You can look at me, not them.  Secondly, talking around me as if I can’t hear you is unnecessary, and frankly insulting."  I felt disrespected because this flight attendant didn’t think to approach me first.  I was angry, and embarrassed because of the small scene that I had the starring role in.  Furthermore, I was literally paying for this insulting behavior.  I wasn’t even given a chance to defend myself.  I was stunned.  Not wanting to delay the flight and too tired to protest any more, I moved.

 The flight attendant mumbled out a canned apology and showed me my new seat.  Thankfully I had the row to myself, I cried silently to myself almost the entire flight.  I wrote a letter of complaint to the airline, narrating the incident.  A few weeks later the response that came back indicated that the flight attendants had done nothing wrong.    I’m not going to say the flight attendants were wrong in their judgment, it didn’t actually occur to me until right now what would have happened if the airplane had run into trouble.  Again, it was more about how the situation was handled much more than why it happened.  I was not surprised, however to learn that shortly after this incident, the airline went out of business.  Karma.

After this incident, I did a lot of research on the rights of a traveler with a disability.  Thanks to the government, air travel is amazingly accommodating.  Now, when I travel, I utilize the services available, especially when I’m alone. It's less nerve wracking to travel with the government on your side.  One of the biggest, and really the only accommodations that I’m qualified for is being able to board early.  I have limited range of motion because of some residual bone fusion that surgeries never resolved, I can’t raise my arms above my head, coupled with being 5’1” means lifting a carry-on into the overhead compartment is not happening any time soon.  Passengers boarding an aircraft can be chaotic, and my needs for assistance can be inconvenient in the midst of all the bustle.  By boarding early, I’m able to get assistance without being an inconvenience to my fellow flyers, and more importantly, avoid the sea of stares as I find my chosen seat - away from the exit row.

Life is full of marbles and mud, or accommodations and emergency exit rows. Sometimes, using the marbles to avoid the mud makes all the difference.   

#WonderWednesday: WI Catholic School Celebrates Week of Kindness & Wonder


St. Mary's Parish Catholic school in Wisconsin are part of the "Wonder" movement sweeping the nation. They cleverly celebrated the book's themes and messages with a "Week of Wonder." Students enjoyed theme days, where they could wear something related to what best celebrates and represents themselves, and on another day could wear something to do with the element that space in the book. They also went to the theater as a class to see the movie "Wonder." Donations were made by the school to CCA. 

Mrs. Grant writes about the experience:
Our school was very moved by the movie Wonder and Auggie Pullman and hosted a WOW week (Week of Wonder).  During the week, students were ‘caught’ showing random acts of kindness, special activities were scheduled and finally an out of uniform day to raise funds towards the CCA.  Attached is a day-by-day listing of the special events as well as a clip from our newsletter showing the fun the students had that week.






Thank you so much for your commitment to kindness, spreading awareness, and raising funds. We  al know that the actions taken during the Week of Wonder will lead to a better, kinder world.

Tuesday, January 16, 2018

#NewsDayTuesday: New York Triplets Thriving 1 Year Into A Beautiful Life

Photo Credit: Newsday


Triplets born in upstate New York are thriving 1 year after being born with Craniosynostosis. Read about this family's courageous first year in this article in Newsday

Watch the video embedded in the story.

CCA has even more information about craniosynostosis on our website. Please take a look at our booklet on this facial difference.

There are more resources at our website on all craniofacial conditions and facial differences.

Sunday, January 14, 2018

The Mighty Writing Prompts for January




On your mark, get set, ......and WRITE! If your New Year's resolution is to write or reflect more, then here are some great prompts from our friends at The Mighty that could help get you thinking! Personal reflections are welcome, too.

Don't want to go worldwide with your story? No problem!. Write something for yourself in a private journal. If you want to share a more polished, personal reflection with just your CCA friends, contact Kara Jackman about publishing it on our blog.  Email kjackman98 @ gmail.com.

Here are those prompts I promised from The Mighty...

1. So often, after years of waiting and researching and more researching, we finally get a diagnosis and then realize the signs were there all along. You may feel regret (even though it’s not your fault!) that you or, more importantly, a doctor didn’t pick up on them. If this is sounds familiar, write about the moment you got your diagnosis and explain the signs that this was there all along. A post like this could help someone still on their diagnostic journey get their answer sooner.
2. Do you experience a symptom related to your condition that most with your diagnosis don’t experience? Tell us about the symptom and how it affects your everyday life.
3. Talk about a good moment that happened in your life that probably wouldn’t have if you or a loved one didn’t have the diagnosis you do. Finding the silver linings of health challenges isn’t for everyone, but if you are someone who has found some good in it all, tell us about that in this post.
4. Describe a movie, book or TV moment that resonated with you because of your life with your or a loved one’s condition. Why did this moment stick out to you?
5. Relationships (both platonic and romantic) are hard even if you are not facing extra challenges. Choose a relationship in your life (from someone you went out with once to a close friend to a life partner, etc.) and describe a moment where your health made that relationship challenging. How did you face that road bump, or what advice would you give to someone going through the same thing?

Thursday, January 11, 2018

Massachusetts' Residents Advocate For Insurance Coverage




By Criss Quigley


Two bills have been filed in the Massachusetts legislature which would close the loophole that allows insurers to deny coverage for treatment of rare, disabling genetic craniofacial conditions primarily affecting the mouth and teeth. Dealing with a craniofacial condition is challenging, and lack of insurance coverage for medically necessary reconstruction of the teeth for people with craniofacial conditions can be financially devastating. An act relative to ensuring treatment for genetic craniofacial conditions (H581 and S511) filed by Senator Julian Cyr of Cape Cod and Representative John Scibak of South Hadley are currently awaiting committee vote in the Joint Committee on Financial Services. The bills would require insurance plans to cover medically-necessary functional repair or restoration of dentinogenesis imperfecta (DI), amelogenesis imperfecta (AI) and ectodermal dysplasia (ED).

Treatment for these rare craniofacial disorders is multi-stage and complex, and initial costs may be upwards of $100,000 - obviously unaffordable for the average family. Without treatment, patients may experience severe pain, difficulty eating, speech problems, multiple infections, bone loss, and psycho/social issues such as teasing and bullying. As with most congenital disorders, treatment is necessary throughout the lifespan.

My daughter and I have been working together to get legislation passed for ten years, and recently testified at the Massachusetts State House in favor of the bills. Also speaking in favor were Representative Dylan Fernandes of Cape Cod, Dr. Yoshiyuki Mochida from Boston University Goldman School of Dental Medicine, Dr. David Tesini from Tufts University School of Dental Medicine, and Alan Holbrook from the National Organization of Rare Disorders (NORD). Legislators were presented with packets of over 50 letters of support from Boston dental schools, organizations and foundations, health and dental professionals, and concerned citizens.

Since 2012, insurance coverage for dental treatment associated with cleft lip and palate has been mandated in Massachusetts. We hope that Massachusetts, long known as a leader in health care, will step up to address this gap in coverage and ease the financial burden on people living with these other rare craniofacial disorders.

Why not ask your legislator to file legislation to mandate insurance coverage for medically necessary treatment of the teeth associated with genetic craniofacial conditions? As more states pass legislation, others will follow suit.

To write letters to the Massachusetts Joint Committee on Financial Services in support of the bill, please visit: https://malegislature.gov/Committees/Detail/J11/190

Wednesday, January 10, 2018

#WonderWednesday: "Wonder" Lesson Plans Available, Free Download!



Educators around the country rejoice! CCA's "Wonder" curriculum is not available with just a click of the mouse. Click the images below to access a PDF of the lesson plans that you can use in your classroom. Thank you to Carolyn Johnson for her hard work on the curriculum for our teachers.























Tuesday, January 9, 2018

#TuesdayNewsDay: Boy With Microtia Honored by UK Futbol Team




A boy from the United Kingdom had an amazing opportunity to join his favorite futbol team. It was a dream come true for this little guy with microtia. He was honored as mascot for the day by the Everton futbol team as they took on Manchester United on New Year's Day.  Read more and watch video from this families incredible experience at the Hartlepool Mail website.

Sunday, January 7, 2018

Moebius Syndrome Awareness Day Is January 24th




Let's celebrate!

Moebius Syndrome Awareness Day is January 24th. Are you ready? Not to worry because Moebius Syndrome Foundation has everything you need to raise awareness, share your story, and learn more about this facial difference. They have a Facebook page and are also sharing Oregon State's social media campaign asking "How do you express yourself?" Learn more about the ways people express themselves that do not involve the facial expression through the useful tool that OSU's Disability and Social Interaction Lab has put together. Their social media ideas have me psyched up. Check them out!


Friday, January 5, 2018

Sign up for Surgery Support Today!





New link, new look for our surgery sign up. We are now using Google forms to capture your information for surgery care packages. If you signed up, send us another request through this new link, and we will send your son, daughter, or loved one a care package when they have surgery. 

Thank you so much for bearing with us through this transition. 

In the care package, your loved one will receive for a "Get Well" card, a care package, or a call of support for you, your partner, or your child! We will work to match your needs with our resources, to help you get through the experience feeling loved and supported. 






Wednesday, January 3, 2018

Grateful For This Great Doctor In Florida And All The Others




What are you grateful for today? What act or procedure that your doctor has performed for you fills you with gratitude?

All of us are so grateful four our doctors. Let's pause and reflect on how wonderful our medical professionals are all across this country.

Last week, a few days before Christmas, a Cuban boy had a tumor removed from his face in a Florida hospital. Read more about it in this Washington Post article.



#ThankfulThursday: Here's To You!

As we sit back and reflect on the past year, we want to thank all of our tremendous individual and team fundraisers for 2017. We are so impressed with all the work you did over the last year, rising to the occasion with the premiere of "Wonder" in November. 

We would also like to thank you for all the kindness you shared with others. Whether it was just holding a door for the next person, or speaking at a local middle school about the #ChooseKind movement. It is very overwhelming all that has been accomplished this year. Just think of all the children you helped get the medical attention they need, learn about Wonder, or will send to retreat. 

Thank you for making 2017 such a special year. 

Here are a few ideas to help start planning your fundraising efforts for 2018. These ideas can be found at our website, along with other clever ways to give. 



  • Lemonade Stand — Mix up some sweet lemonade and bake goodies to sell on your neighborhood street or outside your school. Lemonade stands are very popular and a fun way to spend an afternoon.  
  • Denim Days — Coordinate with your human resources office at work to charge $5 or more per person to where jeans on a particular day (typically Friday).
  • Friends and Family Letter — Send a fund-raising letter to family, friends and associates.
  • Walk-athon, Hop-athon, Cartwheel-athon or Hula-Hoop-athon — Organize children, work associates and/or friends and have them take pledges per mile accured.
  • Bike-Parade — Organize children, work associates and/or friends and have them pay an entry fee to take a neighborhood themed ride!
  • Kitchen Shutdown — Obtain donations of dinners from seven local restaurants and raffle a week’s worth of meals.
  • Craft Fair — Obtain donated space from a school, church, mall or vacant retail space and sell space to local crafters. Sell food, balloons, face painting, etc.
  • Car Wash — Ask local merchant to provide space and water.
  • Yard Sale — Ask neighbors, friends and/or family to join in a yard sale.
  • Motorcycle Run — Ask local Mortorcycle Club to hold a fundraiser for you, or work with local clubs to organize a route, with sponsored stops, and do raffles at each location along the way. Charge a registration fee.
  • Dog Parade — Collect entry fees and have a theme. Ask local officials and VIPs to judge and emcee.
  • Golf Tournament — Work with a golf course to host this type of fundraiser, which typically brings in a large amount of revenue!
  • Fishing Derby — Collect entry fees and give prizes for the most total pounds and largest fish.
  • Benefit Concert – locate a venue, book an act, promote and sell tickets for a fun night of music and dancing!
  • Chili (Tofu, Crawfish, Lobster) Cook-off — Locate an appropriate space and give prizes for the best, most creative, etc. Charge an entry fee and ask the local VIPs to judge. Get your Radio station involved!
  • Sports Tournament — Softball, volleyball, basketball, golf, tennis— Charge an entry fee, get corporate sponsors, give prizes.
  • Fashion Show — Ask local designers and boutiques to help you create a stylish evening full of fashion, fun, and networking. Charge boutiques a sponsorship fee and sell tickets to attend.




 

Tuesday, January 2, 2018

#WonderWednesday: Maryland High School Continues to Spread Kindness


There is nothing more Wonderful than kindness. This school has an entire club designated to spreading kindness throughout their student body. They are taking the ideas and principles in the book "Wonder"

We are so impressed by the kindness club at Atholton High School in Howard County Maryland! They have been helping CCA raise money for over a year now. This week they are selling these T-shirts to raise even more money for our kids. 

Learn more about the club, what they do, and how you might be able to help at their weebly website. You can follow them on Instagram at choosekind_ahs, too 


The Mighty Writing Prompts for January 2018






Thinking about taking up writing in the new year? Want to reflect on your life and experiences? Then check out these The Mighty writing prompts to begin writing your story. 


1. Has a doctor ever asked you a question that caught you off-guard (for good or for bad)? What was your response to this question. If this is a negative experience, how can other medical professionals learn from this so they can improve?
2. Describe a time a person you least expected would help you with your health, helped you. What did they do for you and why did it make a difference?