Hannah Brown in Her Own Words

Editor's Note: Thank you, Hannah for sharing your inspirational 

writing with us. Keep up the great work! 


By Hannah Brown

Having a Craniofacial difference means facing hard challenges, I was born with Apert Syndrome. which means all my bones were fused together. Sure, I may look different on the outside, but on the inside I sound and act like a normal person. Even though I have limitations, I can pretty much do normal things like everyone else.

I had to deal with name calling, teasing, pointing, constant staring when I was younger because of my facial difference. Now that I'm getting older I still get the stares, but thankfully not so much the pointing or teasing.

In November 2017, I flew solo for the first time. It was awesome. Back when I had the trach, I was always scared of flying by myself with it, but not now. Since 2017, I have flown four times. I'm becoming a pro at flying.

A few years ago I decided to write a book about my life and the challenges of living with Apert Syndrome. The book describes what I went through all these years. The name of the book is Facing the Challenges of Life with Apert Syndrome. I'm taking a break from writing, but will soon get back into working on it.

Life is full of trials and challenges. I know I'll be living with this for the rest of my life. Nothing will limit me from doing the things I want to do and the things I love.

Living with Apert Syndrome has a lot of risks, but I'm willing to take whatever risks God throws at me because I know I can handle anything. 

Ask the Adaptive Athlete: How To Conquer Your Gym Anxiety and Begin Working Out

The weather is cold, so we all have to move our workouts inside. For many that means either working out in our living rooms or going to a nearby gym. While neither of these options sound inviting, they are what we are left with.  Fear of the gym, performance anxiety in front of many people, is a real phenomenon for all people. Gym anxiety is further compounded for people with a facial difference, different anatomical structure, in wheel chairs, with artificial limbs, and other physical differences. So what to do?

Change Your Mind and the Body Will Follow

Holding an experimental mindset will help you walk into the gym. Thinking "let me try this machine out for a couple of minutes" versus, "I must use this machine for x amount of reps and x amount of sets or I am a complete failure at life." could mean the difference between regular attendance at the gym and never returning. If our minds are flexible, then our body will follow. 

Move the Body Into Action 

Pick up a weight, 2 lbs, 5 lbs, whatever, and see how it feels in your hand. Try a basic bicep curl, or a shoulder press. Ask yourself, "how does that feel?" If you didn't like it walk over to something else, like the TRX functional training, or the mats to do some stretching or basic, body weight exercises. The stretching and body weight stuff can even happen at home! Be open minded. think of the gym as you once thought of your elementary school playground. Try the slide, swings, or just hang out and watch as others do. You can learn a lot by watching someone.


Your Body, Your Form

File this article published in Self Magazine under "one-size-does-not-fit all."  For those with  Treacher Collins and Apert Syndrome that may feel daunted by the gym because your form is not "right," we see you and hear you. And now, someone has written about it, too.

Check in With a Professional 
People probably wonder how they could approach the gym if they have different bone and joint structure than others. Everyone is built differently. While there are general best practices for how you should lift weights, run, etc., they may not be correct for your body. Check in with a physical therapist or personal trainer in order to learn how your body works best. While you are at it...(here's the disclaimer): Talk with your doctor before you begin any exercise routine. If you are interested in running, get gait analysis done, or try the different cardio machines to see which is the best fit for you!

Assess and Ask Questions
If you can't afford a personal trainer, feel free to ask me any questions that might come up at [email protected]. Also, just slowly take on that experimental mindset and explore the gym like you once explored the playground. See how you feel during the chosen exercise, does it hurt? Are you sore? Reassess in the hours following a workout and in the days after to ensure you do not injure yourself. 

Don't worry if the exercises and lifts that you are performing do not look like those done by others around you at the gym. You need only to do what is right and safe for your body.

Resources
Adapt To Perform Youtube Page https://www.youtube.com/channel/UClosZzwrXmjPzDCwD9OcC0A

Spotlight on Local Resources: Florida Healthcare

If you are a Florida resident, you may benefit from this informative document focusing on all kinds of medical resources available to you! Special Health Care Needs Guide for Florida was updated in July. We, at CCA, thought we would share it with you. 

We hope this helps. 

Jono Lancaster To Speak At Gingertown Dallas at North Park Mall

We are so thankful for Gingertown Dallas. Now in its ninth year, this display of gingerbread houses and other creations made of confections has helped Children's Craniofacial Association. In 2018, just over  $20,000 was raised in Dallas through this incredible event.  

This year Jono Lancaster, motivational speaker and founder of the nonprofit Love Me Love My Face, will speak at this year's build event on Monday, December 3rd at 5:00PM. Dozens of local architects and construction firms come together to create a Gingertown built to scale. 

Gingertown, started in 2006, by David M. Schwarz Architects "is a unique holiday initiative which brings together talent from local design, urban planning, engineering, and construction firms for a live build competition to help spread joy and hope during the holidays." We are thrilled that all these firms come together to help raise awareness about CCA Kids at a place where so many people come together to purchase presents for their friends and family. 

There are Gingertown's across the United States in Washington, D.C., Nashville, TN, Dallas, TX, and Atlanta, GA. Learn more about these projects at http://www.gingertown.com


Event Information:

WHEN: Monday, Dec. 3 from 5pm-7pm, Jono Lancaster speaks at 5:45PM
WHERE: Northpark Center Mall, 8687 N Central Expy, Dallas, TX 75225, on the lower level outside of Nordstrom
WHY: Gingertown is a fundraiser for CCA, but it's free to all participants. Local architects and builders sponsor this event.
MORE: Call the office (214) 570-9099 or email us with questions. 

#WonderWednesday: Jordan Journeys To The Catwalk

Jordan and Chuck Finley

Handsome. Dashing. Fun. These are just some adjectives that describe Jordan Watkins who walked in a recent, charity fashion show to benefit the Orange County Ronald McDonald House in Southern California. Like every other supermodels he had the opportunity to rub elbows with celebrities and other beautiful people. He even got a picture with former Los Angeles Angels pitches, Chuck Finley. Jordan's beauty is far more than skin deep. He and his mom and dad, Dorina and Memo, took the opportunity to inspire and inform people in attendance about Crouzon Syndrome, kindness, and acceptance with a few snapshots. You are a wonder, Jordan. Thank you for sharing your smile, your story, and CCA's message, "Love More, Judge Less" with this Southern California audience. 

Get a CCA "Love More, Judge Less" T-shirt in our webstore. 

Learn more about the Orange County Ronald McDonald House on their Facebook page. 

If you are a patient at Children's Hospital Of Orange County, this may be a great place to stay when you have appointments or procedures planned. 

Baker Family Raises Funds for CCA

By Maigan Baker

When our Daughter, Hannah, was 4 months old we noticed a ridge on the top of her head. We inquired about it at her 4 month visit but no one was concerned. We were clueless to what it could be so just trusted it was all right. At 6 months I pushed again at her check up and they said they would run X-Rays. We did those right after her appointment and the next day we learned about Craniosynostosis for the first time! It was confirmed that her X-Rays looked concerning. We had the choice of seeing someone locally who was a neurosurgeon who did not specialize in kids or to go to University of Michigan, which is two hours away. We immediately said University of Michigan, knowing we would not be satisfied anywhere else. They were able to get us in two weeks later and the surgeons confirmed that she had Craniosynostosis. 

Hannah had surgery on Valentine's Day 2017 (a Wednesday) at 8 months old. While it was terrifying to wait during the surgery and to see her after with her head wrapped and face swollen, we had faith in the surgeons. She ended up needing a blood transfusion during the surgery and shortly after we left the recovery room. Her eyes were swollen shut for a few days after the surgery, too. After all these expected side effects of surgery, things would improve a lot for Hannah. 

When her eyes opened back up on Saturday, this girl was happy and ready to crawl around and be her normal self. While we were overjoyed by her enthusiasm for life, this absolutely terrified us!!! It is crazy how their little bodies bounce back so fast after such a big surgery. She was all smiles after this, except she would get mad at us when we would not let her do stuff. The next two weeks my husband and I took turns working from home, both lucky to have jobs that would allow us a flexible schedule. After those two weeks my Mom came to stay with us for the next two and half months until Hannah was cleared to go back to daycare. We were so lucky to have that help! I do not know what we would have done without Hannah's grandmother.

Fast forward seven months later and you would barely know by looking at Hannah that she had surgery! Her hair mostly covers her scares and she is still a strong little girl who has no clue what she has been through!

While we were in the hospital I signed up to sell Usborne Books & More as a fun side gig as I already work full time. I figured if I did not like it I could just stop, no harm no foul. I knew I loved the books and being social, so I would probably love it. I held my launch party and donated all of the reward books to Motts Children Hospital. They got over $400 worth of books!! We dropped them off during Hannah's three-month check up. 

In June, I held a party where all those rewards went towards Cranio Care Bears, an amazing Organization that sends care packages to kids who are about to have surgery for Craniosynostosis. They received about $200 worth of books. For this fundraiser, my incentive period was up so I could not offer double rewards like I could for my first party. 

Then in September, for Craniofacial Acceptance Month, I knew I wanted to do something for an organization that helped kids like Hannah. So I decided to hold a Cards for a Cause party and donate the funds raised to Children’s Craniofacial Organization. I posted on social media to my friends, family, co-workers and Usborne VIP page that I was selling boxes of cards with 30 cards in them for $30. I told them the proceeds were going to CCA. I ended up selling 20 boxes of cards, netting a $240 donation to CCA!! 

I am super excited to be able to help an organization that helps kiddos with craniofacial abnormalities. Thank you for all you do!

Shop and Give To CCA with the IGive Button!

Help Childrens Craniofacial Association with free donations!

Shop online with iGive.com. Right now, iGive is giving out bonus donations! New members who join by 9/15 can get an extra $3 donation for Childrens Craniofacial Association. The stores make this possible because they want you to like them and shop till you drop. There's over 1,900 socially-responsible stores helping to make donations happen.

I hope you'll give it a try. To learn more or sign up now, use this link: https://www.iGive.com/ymVqd

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Shopping is easy. When you go to one of your favorite retailers that is a member of IGive universe, the button you installed on your browser will pop up, prompting you to click it, and begin shopping on for all your favorite goodies!

Research Opportunity: Infant Cleft Observer Outcomes Questionnaire (ICOO)

Researchers across three hospitals and universities are studying surgical outcomes of cleft lip patients. The Seattle Children's Hospital, University of Illinois - Chicago (UIC), Shriners Hospitals for Children (Chicago) and the University of Washington have teamed up to learn from patient and their parents about their impressions on change of their infants face after surgical interventions. Study coordinators, Laura Steukle and Solange Mecham describe the process of the study and how you can help in the description below, 

Our study team has spent the last two years interviewing parents and craniofacial providers to create a tool to evaluate interventions and treatments that infants with a cleft lip with or without a cleft palate are going through. Now that this tool has been developed, we are looking to validate the questionnaire. To do this, we are asking parents of young babies and young children with a diagnosis of cleft lip with or without cleft palate to complete the iCOO questionnaire a few days in a row at the following times 1) before surgery 2) 2 days after lip surgery and 3) 2 months after lip surgery.  As our way of saying thank you, we are giving parents $5 a day each day they complete the iCOO with a bonus $25 for each complete series, for a total of up to $160 for their time and effort. We are inviting up to two caregivers in the home to participate. Our goal is that this tool will help clinicians and researchers better understand how these interventions are affecting the whole health and well-being of infants and young children with the hope that this understanding will improve future cleft care.

Please share your experiences at this website. 

Dallas Fort Worth. TX Lilly Pulitzer Event

From the Bench with Francis: An Interview with the Man that Discovered the Treacher Collins Gene

From the Bench with Francis

A regular column on craniofacial news and technology by Dr. Francis Smith.

Dr. Francis Smith sits down with Dr. Michael Dixon of the University of Manchester, United Kingdom. He discovered the Treacher Collins syndrome gene (TCOF1). The interview was conducted on October 19th at the University of Manchester and focuses on Dr. Dixon's pioneering research that led to the discovery of the gene and why this research matters so much to those born with TCS. 

Enjoy!

Share Why You Give! for Our #GivingTuesday Social Media Campaign

Help us gear up for #GivingTuesday! Tell us why you give to CCA in the comments below or on the CCA Facebook page, add the hashtag #GivingTuesdayCCA, and we will feature your story in the weeks to come.

Cher-tastic, Week-Long Event Raises Over $11,000 for CCA Kids

Back Row L-R Robert Ryan, Chad Michaels, Ralph Martinelli, Candi Stratton
Front: Paula Guzzo 

An incredibly successful fundraising event took place on the high seas netting Children's Craniofacial Association $11,782 in just one week. The Cher Crewz began in New York and set sail on board a Norweigan Cruise Liner thanks to the coordination of R and R Travel and dedicated Cher fans. 

At the beginning of the week, Cher enthusiasts descended on Rise Bar in New York City to raise money for CCA kids, enjoy performances by Chad Michaels, winner of RuPaul’s Drag Race and Candi Stratton, Miss Trans USA 2019, and bid on silent auction items during the first week of November 2018. Thanks to ticket sales and silent auction items CCA raised $4,400 at this one-of-a-kind event. 

Candi Stratton performs for the crowd as Cher

This diehard group of Cher fans were headed on a cruise together, but not before giving back to our kids. The night began with some drinks and dancing at the bar surrounded by the bright lights of New York City and Cher fans from around the world. Later, Chad Michaels sang a few Cher tunes complete with a number of elaborate costume changes just as the diva herself would do. Next Candi Stratton performed for the crowd stepping out into the audience to dance and interact with everyone in the club. To close out the performances, parent and former CCA board member, Paula Guzzo, spoke about the impact that CCA had on her family after the birth of their son Scott Guzzo 34 year ago. Scott was the CCA ambassador for the Cher Crewz that departed the next day. 

Many talented and generous people were kind enough to donate items to the silent auction. Artist and friend of CCA, Scott Clarke donated a number of his Cher-related artworks. A signed Cher T-Shirt, poster, backstage passes and a hotel stay at Hilton’s Millenium New York Downtown hotel were all ripe for the bidding during the evening’s festivities. 

Scott Guzzo, CCA Ambassador

More performances would await the Cher fans once they boarded the Norweigan Cruise Line ship, Escape. An additional $7,382 was raised through tips donated by both Candi and Michael, more auction items won, a $1,100 donation by the Guzzo family rounded out the fundraising on board the ship throughout the week. The $1,100 donation was matched by global pharmaceutical giant, Bristol Myers Squib. Throughout the week-long voyage, the Guzzos took the opportunity to speak to group of Cher fans and other cruisers about CCA and what it does for our families.  Scott, Paula, and Bob Guzzo made this cruise a rousing success, pushing us into a double-digit total of $11,782. 

Many people were involved in the logistics of cruise, most importantly the Ralph Martinelli and Robert Ryan, of R and R Travel. We cannot thank them enough for considering us as benefactors for this year's Cher Crewz. Many thanks also go out to Rise Bar NYC, who played gracious host to the VIP event on Saturday, November 3rd.  

Excellent work! We love you all!