Wednesday, September 16, 2020

Christian Hadjipateras' Mom Shares Her Parent Perspective



Christian Hadjipateras is part of our Craniofacial Acceptance Month speakers' week. You can watch his video about how he views acceptance of his facial difference below.




A few weeks ago his mother, Marianna, shared with us this testimonial about her experiences raising and caring for Christian. We hope you enjoy what she shared with us. Welcome to the CCA community, Marianna.


I have been wanting to write something for a long time now, ever since my son Christian got involved with your wonderful organisation.


Where to start? Christian was born in London, UK in August 1984. It was my first pregnancy and I had quite a few scans- nothing whatsoever had been detected. Christian was delivered by emergency C-section and because I had elected to be fully anaesthetised, my husband and close family all saw Christian before I did. The doctor wanted me to get my strength back before I met my baby. One day, my mum and my aunt had gone to the paediatric ICU to visit Christian and they saw a nurse taking a Polaroid photo of him : " To show Mummy before she meets baby ....." I later heard that some mums cannot accept their babies and somehow they thought a photo would "prepare " me in a gentler way..... Simultaneously though, I myself realised that if I didn't see my baby soon I may have suffered some sort of breakdown. My husband had been trying to describe what Christian looked like but it was difficult. I have to admit that I didn't even know what a cleft palate was let alone the many other Craniofacial abnormalities he had. .. No matter. It was love at first sight! For all of us. It transpired that the doctors were also very puzzled by the extremely complex and unusual combination of facial differences. They initially thought that the cleft went all the way up to the top of his head and that the frontal lobe of the brain would have been affected. It wasn't.

I will not dwell too much on what happened for the next twenty five years or so but suffice it to say that Christian underwent almost 50 surgeries. The life changing procedures took place in Paris, London, Chicago and Los Angeles.

I am not trained to be a counsellor but I am very open to to helping other parents in any way I can. I feel particularly strongly about this because when Christian was born we had no support groups to turn to. I realise now how profoundly VITAL this support is ....This is why organisations such as yours, Facing the Future in Chicago, and Changing Faces (founded in the UK in 1992) do such amazing work. I am very happy and proud that Christian is involved with CCA.

I wish with every fibre of my being that one day we can live in a society that is without prejudice, preconceptions, intrusiveness and tactlessness and that we will all see the essence of each other with our hearts and with eyes of love.


Tuesday, September 15, 2020

How My Microtia and Atresia Helped Me Find My Purpose







by Camilla Gilbert
edited by Kara Jackman


Browsing through Twitter a few months ago, we found Camilla Gilbert through a post she wrote about hearing loss, disability, and intersectionality with her other identifies – woman, African American, mother. Camilla has clearly accomplished so much that we knew we had to include her story in our Craniofacial Acceptance Month celebration. There are so many children in our community that were born with microtia or atresia, or have it as part of their syndrome, that need to read her words. With multiple academic degrees, a child, meaningful work, and more, Camilla lives the life of so many kids' dreams. 

Camilla Gilbert identifies as a black, deaf woman with bilateral microtia and atresia. For over 30 years, she has fought for people that are deaf, hard of hearing, and people with disabilities. “My lived experiences with microtia and atresia have included confusion, isolation, and pressures of societal expectations to be more “able-bodied” versus embracing my deafness. However, my experiences have taught me resiliency, dismantling assumptions, and genuinely being myself.”

All of this hard, internal work, which Camilla gladly undertook, began at an early age growing up in the West End community of Cincinnati, Ohio, a neighborhood with a tough reputation. Camilla saw it differently though, putting a positive spin on the place she called home for some years. In the West End Camilla says she “observed African Americans being successful as entrepreneurs, developers, and teachers. News media may call the West End ‘the rough side of town,’ but I want to change the narrative of my neighborhood. The West End taught me the importance of work ethic, being authentic, the importance of family, and loyalty towards the people who support you. Without my foundation of the West End community, I would not be the woman I am today.”

During her coming of age, she had the typical trials and tribulations that people with facial differences experience. She writes, “my life with microtia and atresia was a rollercoaster and still comes with challenges. Not being able to find anyone that can relate to your experiences is a very isolating and lonely experience. I recall crying myself to sleep and asking the universe, “why me?” and prayed for typical ears. Bullying was part of my journey beginning in the 6th grade when students were trying to prove themselves. I was typically the target of being attacked and teased. I managed my bullying experiences with my intelligence, ambition, and having the sense that good days would come (I had a vision for myself at a very young age). Also, I experienced curiosity from others with stares, questions, and awkward conversations about my ears. Students and strangers would stop to get a glance at my uniqueness, point, laugh, and walk away. However, during my elementary and junior high school years, my peers were not comfortable seeing my differences, and they made jokes out of my ears. They used to come to me, stare, point, and ask the question that I dreaded each day, “Why are your ears that way?” or “Why do you look like that?” These questions were a constant reminder that I was different where I just wanted to be a typical kid.”

With all the questions and bullying that continued into junior high, Camilla realized she had to adopt a hide-in-plain-sight strategy to get through middle and high school. Thanks to a headband and perfectly placed straight hair, she was able to cover up her differences. She said of the headbands, “I wore different headbands for over 14 years and dismissed my microtia and atresia and hearing impairment, and focused passing as an able-bodied, hearing person.”

Once she reached college, the hiding helped her pursue curricular and extracurricular activities among various students with which she went to school. She says, “College life at Central State University was the first time I did not have any disability services, and I gained independence with my education. However, I was still struggling with my acceptance of microtia and atresia and hearing loss. I continued to hide behind my cloth headband and even forgot the name of my condition. I went to some parties and met people while on campus, but remained feeling isolated. I had a part-time job at a retail clothing store where I developed a family with the women there. I graduated from Central State University with a Bachelor of Science Degree in Computer Science and Mathematics and thought I would have this fabulous IT job.”

Or so she thought!  

After a quick google search, Camilla discovered that the universe had other plans for her.

“I searched the term microtia and began to learn what it was. I knew the name but still felt alone because I did not know anyone else with microtia, so I put it on the back burner, especially since I was going to embark on the new journey of Motherhood. It wasn’t until I held my daughter in my arms for the first time, pure happiness and responsibility developed. Not only did I have the responsibility to care for my daughter, but I also had the responsibility to walk in my truth as a woman with microtia and atresia”.

A year after giving birth to her daughter she stopped wearing the headbands. Two years after that, she found a group of friends with microtia: the Hearing Loss Association of America and Ear Community. From both groups she “learned so much about hearing loss, how to be an advocate, improved hearing aid technologies, and a community of friends with similar life experiences.”

In 2013, she attended her first Ear Community picnic, which sounds a whole lot like CCA’s Annual Retreat. “The first Ear Community Picnic I attended was in Columbus, Ohio. I was not sure what to expect, so I walked towards the picnic shelter slowly with nerves and met with the picnic host Justin. Justin is an adult with microtia and shared experiences with microtia. I began to see babies, kids, and other adults with microtia, and it was a very emotional experience. Before this picnic, I never experienced being in a community with microtia. Parents came to me to get advice and reassurance that their child with microtia would excel just from my own lived experiences. The encouragement from the kids, adults, and the parents sparked a fire in my soul. The community has influenced my drive, passion, and advocacy for people with microtia. I switched my career path from IT to Social Services and Education.”

Clearly driven by this passion, she pursued a master’s in social work from the University of Cincinnati, and more recently is working on a Doctor of Education from Northern Kentucky University. Her current research focuses on disability studies and finding ways to weave in her lived experiences. Her article “Microtia and Atresia: Navigating a World of Difference” appears in the May/June Hearing Life magazine published by the Hearing Loss Association of America.). Her current project, she says, “includes creating a positive platform to highlight the accomplishments, successes, education, and resources for people with microtia.” Further she affirms, “I no longer want our differences to be associated with medical definitions. My motto is, ‘we are more than just our ears!’ She is founder of Microtia Life, LLC, (http://www.microtialife.com) and uses the hashtag #microtialife to spread her message on social media. She has a fabulous Youtube account filled with videos, too. Please check that out. 

 


Thank you Camilla for being so open and honest about your journey. We look forward to hearing more about your work, research, and life as you move into the future.

Monday, August 31, 2020

#ThankfulThursday: Madisyn's Barn Busting Yard Sale Raises Over $2200 in 2 Days


Hope truly is not cancelled. Our CCA families are still celebrating Craniofacial Acceptance Month in big ways during a worldwide pandemic. During the weekend of August 21 and 22, the Madisyn, Lisa, and Dave Alters hosted a huge yard sale that raised over $2200 in just two days. Everything you could imagine from clothes, housewares, records, games, and more were on sale and up for grabs all to help our CCA families. 

The yard sale was not all about raising funds, it was also about sharing and owning your story, too. Madisyn and her family were able to share their story with the many people who shopped. Lisa says, "THANK YOU” to all who attended our Yard Sale in Harmony, PA on Friday and Saturday August 21 and 22.
We had the opportunity over the past 2 days to meet some “AMAZING” people & share Madisyn’s story and surgical photos about having a Craniofacial Difference There was “LOTS” of work involved, AKA a labor of love, but it was a triple benefit...people got good deals, we purged stuff we didn’t need and CCA is getting a $2,250 donation. We were also able to maintain safe social distancing."

September is Craniofacial Awareness Month and to kick it off the Alter family have another Labor Day yard sale in the works. Friends and neighbors should stay tuned to the Lisa's Facebook timeline for the dates. Lisa says, "We are likely to hold the sale on Friday, Sept. 4th & Saturday, Sept. 5th from 8AM-2PM." (Still, as with everything this year, please check back to be certain.) 

Further, the Alters family encourages other families to commit to some fundraising too. Lisa says, "I would encourage our network of families to take this opportunity to do something similar, in an effort to support CCA, in lieu of our Annual Picnic & Gatherings in September! Even if you’re unable to donate ALL your proceeds, every little bit helps."

Forever innovative fundraisers, the family hosted a spaghetti dinner at the beginning of the year that spread awareness, fun, and built connections with CCA members new and old. The dinner and donated auction items raised a whopping $7,000 thanks to the hard work of Seneca Valley student Maddie Karchut. You can read more about it in this blog post.


Thank you, Madisyn, Lisa, and Dave for all you do for CCA!


Thursday, August 27, 2020

Hope is Not Canceled – We Celebrate Craniofacial Families in September 2020



Dallas, TX -- Children's Craniofacial Association celebrates its 16th Annual Craniofacial Acceptance Month this year. We continue to keep this annual tradition alive, while we socially distance and stay safe.

This year our theme is “Hope is Not Canceled,” as our mission statement pledges “to bring hope and empowerment to children and families affected by facial differences.”

While we cannot gather in person, we still believe that knowing someone out there shares your unique journey of living with a facial difference in your corner, makes life easier and so much better. This year we have pivoted our family networking to offer a bevy of virtual offerings -- our First Ever Virtual Retreat in June 2020, hosting ongoing virtual support group sessions, engaging in art therapy hours, creating storytelling workshops, and so much more. Our members will remain in solidarity with one another from the safety and convenience of home. Our CAM celebration this year will continue to connect families from across the country through the power and magic of technology.

Incidentally, going virtual has allowed us to reach more people than ever! Including those previously underserved who could not attend regional events. Now more than ever, we have hope and insight for a more inclusive future.

The fun continues during September as we encourage families to contact their local media and state government offices to recognize Craniofacial Acceptance Month and the amazing strength and resilience of our kids. All month long, we will have an awareness-raising sign campaign. Look for our CAM signs on a front lawn near you. From Monday, September 14th through Friday, September 18th, we will feature the stories of inspirational speakers each day on our social media platforms. And finally, during the third week of September, we will participate in Kindness Rocks, a fun project where kids decorate rocks with motivational sayings and leave them for others to discover in parks, on trails, and even in offices and classrooms!

All of these efforts bring awareness to those who look different, but who feel love, hope, and hurt just like you! Please join us because together we can end bullying and break down the barriers of discrimination. It takes a sustained effort to educate the public as we work together to foster compassion, tolerance, and empathy for all humans. These precious virtues will be just a click away this year! Everything will be online and accessible to all!

Children's Craniofacial Association, a 501(c)(3) nonprofit organization based in Dallas, Texas and founded in 1989, serves over 20,000 families per year and an additional 10,000 unaffected students in schools across the country. CCA's mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look. To request free educational curriculum and additional resources, visit http://www.ccakids.org.

Tuesday, August 25, 2020

Masks For All 2.0: Masks for Communication, Lip Reading, and Eye Protection

Masks For All...The Quest Continues

My quest to improve accessibility to masks continues. Back in March, I posted a video and created a blog post that you can find here about masks that tie around the head rather than anchor around the ears. Some people with craniofacial differences do not have ears, or like me, they wear hearing aids that take up real estate where the mask would fasten. Through the use of masks that tie to the head, an ear saver, or headband to bypass the ears, we discovered that we could overcome anatomical issues so that masks can fasten to the head. Now, as we head back to school or into work, we must move to the next level of masking up, focusing our attention on improving communication for those that lip read and keeping eyes safe. 

Lip-Reading Masks

Teachers will be back in classrooms with their students. People will be back in the office a few days of the week. All of us will be the need to wear a mask. Many people that are hard of hearing or deaf depend on lip reading to understand another person. In the video above, I tested out a mask with a clear plastic hole around the mouth for easy viewing of the lips, only to find that the clear plastic easily fogs up. After posting this video to my personal Facebook account with an inquiry about what to do, many responded with great answers. Some shared that a drop of dish soap would help, others said I would need to go to the scuba store to buy defogger used for scuba goggles, other said try some Rain-X. All of these were great suggestions and I did want to try all of them, but cost and toxicity forced me to try the dish soap first. I decided to grab a tiny bit of liquid soap, a tissue, and smear it across the inside of the clear plastic. It worked! The mask did not fog up, and my lips could easily be seen moving without the mask fogging up. Check out the video below to see the positive results. (I moved the camera around a bit so you can see the mask from all angles.)

   


Face Shields To Protect Eyes

Face shields are great, but I had lots of questions. Will they protect others from contracting COVID-19 from the nose and mouth? Will they protect your eyes?  I saw people wearing them, and thought maybe this could be a good solution for the communication barrier issue, but quickly concluded that there was not enough coverage around the mouth and nose. Water vapor, released from the mouth and nose, will get into the air on all four sides of the face shield. However, the shield is great for eye protection, preventing COVID-19-laced droplets from entering your eyes. If you have trouble blinking, or an inability to close your eyes, I would definitely consider either some protective eyewear or a face shield. 

All of that said, please let me repeat, the face shield does not provide adequate coverage for the mouth and nose. Please follow the Centers for Disease Control and World Health Organization recommendations for proper coverage of the mouth and nose on this great website. Around your mouth and nose, your best bet for protection is a mask with a clear plastic front. Make sure the fabric around it is tight around the face. 

You can watch my short video demonstrating eye shields below.




Where Do I Purchase A Clear Front Face Mask or Face Shield? 

In conclusion, please stay safe and follow the recommended guidelines put forth by the CDC and WHO. If you are out in public for long periods of time, I would highly recommend the use of a mask with a clear plastic window. Masks like this one will even benefit those that are able to hear, as many people lip read without even realizing it! Clear masks can be purchased from a variety of vendors. The one I demonstrated in the video is from Chic Me. Sadly, these did not fasten with ties around the head. They anchor to the ears. Another great place to purchase is from Rafi Nova, which has kids' sized masks. Rafi Nova sells masks that tie around the head or fasten around the ears. 

Face shields are important, too, especially if your child has any kind of differences around their eyes. I really love the Instashield demonstrated in the second video. It's lightweight, attaches to your favorite ball cap, and is made in the United States. Your kids will love it because they can wear their favorite team's hat while staying safe. 

We have to do whatever it takes to stay safe. I hope these tips help as we move forward into the fall and winter months.  

Wednesday, August 19, 2020

CCA Stands Against Bullying In Latest TikTok Trend #NewTeacherChallenge

It seems like there is no end to the ways that people can choose to be hurtful and bully others online. This week, we’ve learned about the disturbing new trend called the “New Teacher Challenge” on TikTok. Two activists, Lizzie Velasquez and Alyce Chan, have addressed this terrible challenge and the ways it hurts those with facial differences. 

Lizzie Velasquez

We do not want to belabor the points made by Lizzie and Alyce, nor take away from the things that have been so eloquently said, but we do want to clearly state that this type of behavior is wrong. It’s cruel. What makes it even more terrible is that parents are making this joke to their children, thus passing along the idea that this type of humor is acceptable and encouraged. 


We hope you will take heart, that even though the online bullying continues, there are people taking a stand. CCA continues to report these accounts each time we find them and we will continue to press the marketing team at the TikTok app to remove content that bullies and discriminates. 


Our goal is to make the world an accepting place for all, but especially those with facial differences. While it may seem impossible, if we want bullying to end, we have to take action. The world needs inclusion and empathy, now more than ever, and there is no one better than us to carry out the mission of acceptance. Stay strong as we lead the #ChooseKind movement and help others realize that #DifferentIsCool.


Wednesday, August 12, 2020

Chicks 4 Charity Host Online Fundraiser with Boon Supply

chicks logo


 Woman's Life Insurance Society Chapter 827 Chicks 4 Charity will be raising money this September for Children's Craniofacial Association. Their mission is to empower and give hope to individuals and families affected by facial differences. 

Woman's Life Insurance Society will match the first $500 raised and Chicks 4 Charity will match the next $500 raised.

You can participate in our Shop for a Cause with Boon Supply...


Support our fundraiser by shopping at Boon Supply! https://www.boonsupply.com/1095494

Chicks 4 Charity receives 40% of purchases made.  Goal is $5,000 in purchases.  They have a wonderful array of bags, accessories, kitchen/food items, gift ideas and more.  It is a wonderful way to shop for birthdays, the upcoming holidays, back to school, work  etc.  Whether school or work is in person, or virtual, they have something for everyone.  Shopping for this event occurs from August 12 through September 30, 2020.  Shop early and often.



Thank you so much to Sue Giles, and her friends at the  Woman's Life Insurance Society Chapter 827, for dedicating their fundraising efforts to CCA Kids!

Tuesday, August 4, 2020

Watch David Roche Conduct A Weekly August Storytelling Workshop Every Tuesday



Join us every Tuesday evening during the month of August for a storytelling series at 6pm CST (7pm ET, 4pm PT). Watch how 5 speakers transform and build on their story telling techniques over the course of a month.

We invite you to be part of our audience to experience the stories our storytellers will tell and learn from the techniques our mentors will share. This is a unique format that will allow you to learn from the presentations, and submit feedback through chat during the event.

Wednesday, July 22, 2020

Massachusetts Department of Elementary and Secondary Education Staff Donate $400 To CCA Kids



Schools may not be in session over the summer, but the work for all school systems continues behind the scenes. Mary Ann Jackman, mother of CCA staffer, Kara Jackman, is one of the people that makes schools kind, welcoming spaces for diverse students in cities across the Commonwealth of Massachusetts. After 11 years of service as a regional director for the Department of Elementary and Secondary Education Statewide System of Support [SSoS], she brought her service to a close on June 30th. In her honor and in lieu of a gift, her colleagues donated $400 to CCA after hearing about the good work that we do for kids across the country. On top of that $400, Mary Ann and her soul mate and husband, Patrick Jackman, contributed an additional $200 towards their daughter’s birthday club fundraiser. This $600 will bring about a positive impact for our families, providing life-changing medical care for kids in need, building family network connections, and educational materials for students of all ages.

Mary Ann and Patrick Jackman in San Diego, CA


Mary Ann Jackman is a tireless advocate for children in urban, diverse municipalities from Chelsea, Framingham, Randolph, Taunton, and Lowell.  She began her educational career at schools in Dorchester, Jamaica Plain, and Roxbury.   She taught at various grade levels, plus put her certifications in math and computer technology to good use in the Boston Public Schools. Mary Ann was the first to bring computers into Boston classrooms. Later, she would move into administrative positions, working as an assistant principal, principal (of two schools no less), and ultimately superintendent in a small town closer to the family home, so she could better care for her family.  She retired as superintendent in 2006, but her passion for education remained intact. Mary Ann knew there was more work to do. It was then, after two years working at an Apple retail store, that she returned to work in education with the Department of Elementary and Secondary Education. There she teamed with colleagues and partnered with schools/districts to work together to better understand and support the needs of the diverse and changing student populations, toward the goal of improving outcomes for all.  Surrounded by dedicated colleagues and school/district leaders, school improvement plans were developed, implemented, and progress monitored; student opportunities and achievement grew and improved. 


Her colleagues wanted to share their appreciation for her years of leadership and hard work. Mary Ann is a tough woman for whom to purchase gifts, so when she caught wind of something going on, she talked with her long time colleague Casel Walker and SSoS assistant director, Rebecca Hyde, about CCA and the work that CCA did in the wake of the COVID-19 pandemic and her daughter, Kara’s, passion for creating opportunities and making a difference for those with facial differences.  


Mary Ann leaves a positive impression on all people with whom she works. She exemplifies all the principles in our #ChooseKind initiative, especially for black, indigenous, and students of color. Many of the team members were touched by her work ethic and eagerly took the opportunity to donate in her honor. Thanks to Mary Ann’s leadership, all of them live out Margaret Mead’s message. “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has."


CCA is grateful that this group of thoughtful, committed citizens has helped to improve the lives of families in the facial difference world, too. Thank you to the Massachusetts Department of Elementary and Secondary Education Statewide System of Support Coastal Region. We salute you, your work, and the countless opportunities you gave to a young girl from Dorchester that just wanted to help children reach their aspirational educational goals


Three cheers for you, Mary Ann! What a life well lived!


Monday, July 20, 2020

#ChooseKind Schools: Massachusetts School Reading Teacher Visits CCA Offices

Mrs. Lima of the Morse Pond School in Falmouth
Massachusetts came to visit the CCA offices in December 2019
before coronavirus hit. 


Before the coronavirus struck the United States, friends and teachers visited the Dallas, CCA offices. One of them came as 2019 came to a close. 

Thank you Mrs. Lima for stopping by our CCA office in Dallas, TX in December 2019 before our world turned upside down with the coronavirus. Great timing. Mrs. Lima is a Reading Teacher at Morse Pond School in Falmouth, Massachusetts on good, old Cape Cod. She teaches mostly 5th and 6th grade students. 





Over winter break, Mrs. Lima was in town visiting family and friends. She dropped by to send along some pen pal letters that her students wrote to our CCA Kids. She had been in contact with Khadija, our outreach director, about the pen pal program, our #ChooseKind Initiative, and curriculum for her students. During Mrs. Lima's visit, Khadija was kind enough to give her a tour of the office suite and provide her with more resources for her kids.

Thank you Mrs. Lima and Morse Pond School staff for teaching your students the importance of kindness through our #ChooseKind programs. 

If you are a teacher looking for curriculum or ways for your kids to connect with CCA kids with facial differences, please visit our Choose Kind Initiative webpage or email Khadija at khadija.ccakids@gmail.com. There are resources for parents, kids and more on our website. 

Saturday, July 11, 2020

Apply For This Life-Changing Internship with Libra Group



The Libra Internship Program is a paid opportunity for undergraduate students to intern with the Libra Group and its global businesses. Internship roles are available in social responsibility, finance, engineering, human resources, accounting, hotel operations and more. The Summer 2021 program will run from June 7 – August 13, 2021.

If you are interested in applying to the Summer 2021 Libra Internship Program this fall, register below for Libra’s upcoming information session. Please note that slots are available on a first come, first serve basis.

Thursday, September 10th from 5:30-6:15pm EDThttps://bit.ly/2Z28DzY

Friday, July 10, 2020

Strategies that Stick, Med-El Offers Promoting Positive Behavior At Home Webinar





On July 18 and July 21, join a MED-EL parent workshop that will focus on promoting positive behavior at home using Pyramid Model strategies for preventing challenging behavior in children with hearing loss.


Sign up for this virtual learning opportunity here.


Tuesday, June 23, 2020

#ThankfulThursday: Manny Ventura Runs 5K Every Day In July For Kids

Thanks Manny Ventura for including us in your celebration of Cleft lip and palate awareness month. Manny is raising awareness and funds for many craniofacial nonprofits across the country by running a 5k every day during the month of July. Please help him, and us, by donating to his GoFundMe page.

Thanks, Manny! Keep on running.


Saturday, June 20, 2020

Summer 2020 Virtual Gatherings

FACES Camp 






Join FACES: The National Craniofacial Association is happy to announce FACES Virtual Campfires, free online events for children with facial differences and their buddies! Here's just a few of the cool things we'll be doing 
🌞Scavenger hunts, Skits and sing-a-longs, 
Sc
🍫S'mores
🤸‍♀️Games
👭Friends 


Take part! Stay safe! Meet new friends, and have fun! 

Register at http://www.facescamp.org/



National Organization for Rare Disorders 




NORD presents its patient and provider-focused conference,. "Living Rare, Living Stronger" Virtual Forum on July 18th and 19th. Register now to learn practical tips on how to live your best life with a rare disease. Practitioners and caregivers will learn more about how to treat the whole person and patient. The two-day event hopes to be fun and educational. Register today at https://rarediseases.org/living-rare-forum/







Sunday, June 14, 2020

Alabama School Chooses Kind Raising $200 For CCA



                               


The sister of Anna Rogers Milican and her students at Cherokee County Career and Technology Center raised around $200 selling paper brains and skulls for CCA! The students in these classes were moved after hearing a speaker's bureau member share their story during a school assembly in February 2020. 

Above are some images of all the paper brains and skulls that students purchased, wrote their names on, and displayed in the hallway of the school to honor CCA kids. As you can see many students participated in this fund-raising and awareness-engaging event. 

We are so grateful for your ability to come together. The $200 will help a child get life-saving surgery they need, stay connected in the CCA family, and help other schools like yours teach kids empathy building, and bullying prevention skills they will use for the rest of their lives. 

Keep choosing kind, Cherokee County!

Friday, June 12, 2020

Amazon Smile...Now Available on the Amazon App!

Just in time for Father's Day, you can use AmazonSmile on the Amazon phone app now. Follow the instructions below to help us while you shop on your phone or tablet. 

Wednesday, June 10, 2020

Ask the Adaptive Athlete: Jim Bagby Jr



Q: Are there any current or former major league baseball players born with facial differences? 

Funny you should ask, because yes there was a baseball player named Jim Bagby, Jr. that was born with a cleft lip, and possibly palate, too. He played for the Boston Red Sox, Cleveland Indians, and Pittsburgh Pirates.

His Career 

Bagby toiled away in the minor leagues for three years, perfecting his pitching performance from 1935-1938. Throughout his entire major league career, he would be up and down, between the minors and the big leagues, travelling all around the country playing on teams with wild names like the Little Rock Travelers and the Tampa Smokers.

Bagby Jr. played nine major league seasons spending his first three seasons in Boston from 1938 - 1940, then moving to the Cleveland Indians from 1941-1945. James Elfers, Society of Baseball Researchers (SABR) historian, shares one highlight from Bagby's four seasons with Cleveland, "he was the Indians pitcher in the July 17, 1941 game, which ended Joe DiMaggio's famous 56-game hitting streak." In 1962, Bagby reflected back on that moment saying all he could do was hurl "fastballs." He added, "Joe hit one of them hard, but he just hit it to somebody." That "somebody" was Lou Boudreau, shortstop for the Indians, who flipped the ball to the second baseman for second to first double play, sending DiMaggio back to the dugout.(1)

In 1942 and 1943, Bagby who was then with the Cleveland Indians, had standout seasons with 2.96 and 3.10 ERA respectively and appearances at both All-Star games. He pitched over 270 innings each season, the highest pitch counts of his career. Clearly, when he was on fire he burned brightly. His fastball never let him down, while his off-speed and curve were good to him in a pinch.

In 1946, he returned to Boston after five years in Cleveland. He became a member of the historic Boston Red Sox World Series team. Though the Sox did not win it all that year, Bagby had the once-in-a-career opportunity to play with such legends as Ted Williams, Bobby Doerr, and Johnny Pesky. The team, still managed by Joe Cronin, lost two games to the Washington Senators in a best of three series, playing 156 games in total that year.

Bagby Jr. moved to a reliever role, reducing his innings pitched during the 1946 season. His appearance in the World Series solidified his place in the history books. Bagby and his father Jim "Sarge" Bagby were the first father and son to make appearances in World Series games. His father in 1920 for the Cleveland Indians, and Bagby Jr. in 1946 for Boston.

Baseball Almanac
Bagby Jr's last year in the major leagues was spent with the Pittsburgh Pirates in 1947. He would end his baseball career in the minor leagues playing in Indianapolis, Atlanta, and Tampa from 1948 through 1951.




His Facial Difference and Mid-Century News Photography

The jury is still out on whether his cleft was repaired or not. (2)  Elfers, of SABR, noted that back in the late 1930s and 1940s, newspaper photographers would doctor photographs to make professional ball players look their best. Elfers says, "photographers seemed to make a point of either not photographing his facial difference or camouflaging it with lighting tricks. In short, it was something he had that almost no one talked about and fewer showed." Elfers reflects further on his newspaper research saying about his facial difference, "the press noted he had it, but I was not able to determine its severity." The newspapers really wanted these giants of the game to look what they thought was "their best."

His Family and Support System

Many of images we see of Bagby Jr. make it appear that his facial difference was minor. While not much is written about his medical history, some was written about his character. His family was a great support system to him. He would reach out to his father for advice about how to handle life in the "Bigs." Jim had a devoted mother and fiancé, too, his high school sweetheart.

A Boston Globe article dictates a phone conversation with his father the night after his first start in the majors in 1938. The 21-year-old, newly-acquired Red Sox pitcher got the ball on the first game of the season against the World Champion New York Yankees. Boston won the game 8-4. His father says it all when he comments that Red Sox Manager Joe Cronin made the"smartest baseball move he had ever heard of." Bagby Sr. also commented that this start, "was the greatest thing that could have happened to Jim. He'll have confidence now. He's always had courage and he must have needed it to come through under that kind of test."(3) It was really sweet to read this loving exchange among the Bagby family. The bit about his father wanting him to feel confident rings true for all of us with facial differences, for it is all our parents and friends truly desire for us.


Another Boston Globe article published a few months later shows both his mother and fiancé sitting together.  A fiercely private player, one of Jim's teammates tipped off the reporters that his mother, Mrs. James Bagby, and fiancé, Miss Leola Hicks, were in town visiting Boston to see Bagby pitch. The two excited women were far from shy with the reporter. His mother says she got such a "thrill out of watching Jim beat the Browns the other day," but that it did not "compare with the feeling that swept over me the night I had learned Jim had won from the Yankees in the opening game of the season." Fiancé, Leola Hicks says they met while both played in a "basketball doubleheader bill in Atlanta about three years ago." The headline boasts that Bagby's "Two Best Girls Are In Town." (4)


Getty Images

Clearly with a strong support system in place Bagby was able to accomplish great success. He had determination and grit, too. How else do you throw 270 balls during a regular season that features fewer than the 162 games? He must have had the resilience, determination, and drive that only a person with a facial difference calls on in times of struggle. He most likely earned those attributes in much the same way that members of the facial difference community do: through scary medical procedures,  enduring teasing, and growing up feeling a little different. With this life experience, he was able to shrug off the pains of being sent to the minor leagues multiple times during his baseball career. Going down to the farm after playing at the major-league level can be demoralizing to a player, forcing them to question their ability to play the game they love. But Bagby persevered, and is quite the inspiration to us all to fight for our dreams.

With hard work, a strong support system, and a heart of gold, anything is possible.



Footnotes

1) New York Times, "A Mystery Man Is The End to DiMaggio's Streak," July 15, 1990

2) I intend to do more thorough research about this part of Bagby Jr.'s story. I am very interested in Elfers' claim that photographs of professional athletes were doctored because the public had them up on such a pedestal. I hope to pursue this through Bagby Jr. as an extended research project as a member of the Society for American Baseball Research.


3) Daily Boston Globe, "Beaming Red Sox Recruit Tells His Folks of Victory,"April 19, 1938


4) Daily Boston Globe, "Young Jim Bagby's Two Best Girls Are In Town, June 5, 1938







Tuesday, June 9, 2020

Friendship Fridays: Share Your Story With Miss Springfield...And the World!



My name is Brianna Legner. I am a soon-to-be graduate of the University of Illinois with a bachelor’s degree in speech and hearing sciences.

While I am involved on campus, my most impactful passion is my involvement with the Miss America Organization. Currently, I hold the title of Miss Springfield 2020 and will compete for Miss Illinois in September. 

In order to compete in this organization every candidate must have a platform they promote during their year. My platform is, "It's More Than a Smile", which embraces the uniqueness of children born with a craniofacial difference and helps create a culture of kindness and inclusion. Through my platform, I am fundraising, empowering, and giving hope. 

I created my platform to bring awareness to the stories behind the smiles.
This past year, I began my involvement with the Children’s Craniofacial Organization and fell in love with their mission as it perfectly aligned with my goals and values. I loved their curriculum guides and was planning on raising awareness in schools and promoting the #choosekind curriculum before COVID-19 hit. Due to many of my appearances being canceled, I have been searching
for ways to continue promoting CCA’s mission of empowerment. 


Recently, I came across a quote from CCA stating, “There will be more children needing to connect with kids just like them next year than ever before”I thought to myself why next year why not now, and Friendship Fridays was born.

I want to feature some of the amazing children all over the nation on my Miss Springfield social media pages. I am extremely excited for the upcoming Friendship Fridays, but more importantly I am excited to feature these awesome children. If you have an awesome Wonder Kid please contact me at blegner20@gmail.com. 

Thursday, June 4, 2020

Virtual Retreat Bios

 Ms. Harlena Morton, Special Needs Parent Consultant 
Harlena has an M.Ed. Counseling, B.S. Communications & Secondary Education. She has worked as an Educator for 39 years in Pennsylvania and Alabama, for adults & children, and is currently a high school Guidance Counselor for LSS, MDS, Magnet Students and the Military Rep. She's the Parent Leader & Advocate for PA Medical Home Health Initiative, CAC (Citizens Advisory Committee), Volunteer Parent for CCA & FNMS; and the former Parent Rep for Philadelphia Mayor's Office of Disability Services and CHOP Chestnut Hill. She's the loving parent of two adult children, one with Nager Syndrome. She was rasied and resides in Philadelphia, PA.





Michael Douglas, Consumer Engagement Program Manager, North America, MED-EL Corporation
Michael is a Speech-Language Pathologist, Certified Auditory-Verbal Therapist and a Consumer Engagement and Rehabilitation Program Manager for MED-EL Corporation. Before joining MED-EL he spent the last two and a half decades serving children, families and adults with all levels and types of hearing loss in the listening and spoken language approach.







Robert Wagner,
La Jolla Country Day School Performing Arts Lead Educator
Robert is an artist and educator that believes in using the theater as a tool to create positive change in the world. He is currently the performing arts department chair at La Jolla Country Day School and previously toured the country as a Wild Rabbit in ‘The Velveteen Rabbit’, danced at the Shawnee Playhouse, and choreographed and assistant-directed two La Jolla Playhouse productions with Sledgehammer Theatre.







Most importantly, Paula Guzzo is the Wife of Bob, and mother of Scott and Aaron. She has worked as a Pharmaceutical Medical Representative & in Pharmaceutical Sales Training before motherhood. She has also worked for InSource, Indiana's Parent Training & Advocacy Center as a Regional Program Specialist; at Sycamore Services as a Transition Coordinator; at Evansville-Vanderburgh School Corporation (EVSC) as both Coordinator of Parent Supports, Special Education Department, and as the Family Engagement Coordinator for the Academy for Innovative Studies Alternative School. Presently she works at Sycamore Services as Community Consultant. 

She has volunteered as an educational advocate for InSource before employment with the and her and Bob's advocacy resulted in Scott being the 1st EVSC student with multiple disabilities educated in a general education classroom. She was a Guest of President Clinton at the White House signing of the Individuals with Disabilities Educational Act, Received a Jefferson Award in recognition for advocacy for children with disabilities, has Presented at local, regional, state, and national conferences on Educational Advocacy, has Testified at State hearings on Special Education, Assistive Technology, & Medicaid Waiver, has Served on Focus Group to shape how Indiana's Katie Beckett Medicaid Waiver would look when initially implemented, has Served on the leadership team to close down 5 EVSC school programs and launch a new EVSC alternative school, was Appointed by 2  governors to Indiana Governor's Council for People with Disabilities, and served on various councils and boards, including CCA's Board of Directors. 



Liz Cox is a wife, mother, and friend from Springfield, MA. She has an almost eleven year old child, Nova, with Pfeiffer Syndrome, who opened Liz's eyes to the world of parenting a child with complex needs (and parenting in general). These experiences kick started a fierce love of supporting other families in their journeys raising extraordinary humans. Professionally, Liz works at the MA Department of Public Health for the Early Intervention Parent Leadership Project, helping ensure early intervention programming and policies are developed with family voices present, and helping families become engaged across systems of care. In her free time, Liz is an avid maker, who enjoys gardening, cooking, and spending time with her family making the mundane and adventure.



Karla Molina is a Marriage and Family Therapist with over 15 years of  experience in providing therapy to children, adolescents, adults and couples. Karla specializes in treating depression, anxiety, childhood trauma, parenting, family conflict and having a child with disabilities. In addition, Karla has worked for 7 years in school districts as a Mental Health Provider to children and adolescents in Special Education. Given that Karla has a son, Max, with Treacher Collins Syndrome, she has learned and used her advocacy skills to support her Max's education. Karla is a strong believer in the power of having community, a strong support system, and faith. Karla regularly develops content and parent workshops for a non-profit organization to assist underserved communities with effective mental health education and techniques. Karla enjoys music, reading about the latest interventions/research around mental health and special education, networking with like minded individuals and spending quality time with her husband and three children.   



Pedro Molina is celebrating 18 years of marriage to Karla Molina and has three children: Isabella 13, Emilio 11 and Max 9. As a professional, Pedro is a 20-year veteran of the Health and Wellness Industry. In 2011, Max was born with Treacher Collins Syndrome and there began the journey with medical procedures, emotional health and eventually, Special Education.  As an advocate for his own son, Pedro attended the Special Education Law and Advocacy Series (SELAS) through the University of San Diego extension program and has personal experience with due process and mediation. He says, “as a parent you know your child more than anyone and you are the most important member of the IEP process.” 




Cashel Gaffey, MSW: ConnectMed International Program & Fundraising Coordinator
Cashel earned her Master of Social Work with a Group Work Concentration from the University of Connecticut in 2017.  Cashel earned her Bachelor of Arts in Sociology from Seton Hall University in 2013. She has experience facilitating clinical social work groups in inpatient hospital settings and has brought those skills to ConnectMed.  Cashel helps facilitate family group-style discussions at Camp Cosmos Therapeutic Day Camp, as well as at the Children’s Craniofacial Association Annual Retreat at CMI’s Camp CARE.






Rita Albert, JD, Executive Director, ConnectMed International 
Rita is an attorney certified to practice in Illinois and California, and before the United States Patent and Trademark Office.  Over the last 20 years, she has worked in private practice, as in-house counsel, as a law school professor and a contributing author to legal publications.  Ms. Albert is active in the San Diego nonprofit community and has served as a legal consultant and/or board member to several nonprofits, including CoolGlobes Inc., The Children’s School, Elite Rugby Foundation, and Brighter Futures for Beautiful Minds.  Ms. Albert played a critical role as legal consultant to ConnectMed since its inception. Since January 2014, she has served as Executive Director, managing operations and programs in collaboration with the Board of Directors.



Azmaira Maker, PHD
Dr. Maker is a licensed clinical psychologist with over 20 years of experience with adults, children, and adolescents.  Her extensive doctoral and post-doctoral training at the University of Michigan, Ann Arbor enables her to provide a range of services, including: diagnostic evaluations, psychotherapy, parent guidance, and psychological testing.  She is also the author of Aspiring Families, a book that provides guidance on how to talk to children about divorce, and is a frequent public speaker on the topic.


Dr. Annie Drapeau 
Dr. Drapeau is a pediatric neurosurgeon and assistant professor at Nationwide Children’s Hospital and The Ohio State University College of Medicine. Her clinical interests and research mainly focus on patients with craniosynostosis. She enjoys the collaborative work with the craniofacial team.












Dr. Ibrahim Khansa
Dr. Khansa is a pediatric plastic and craniofacial surgeon at Nationwide Children’s Hospital. His passions include craniosynostosis, midface surgery and orthognathic surgery.













Dr. Gregory D. Pearson
Dr. Pearson is a pediatric plastic surgeon and associate professor specializing in craniofacial surgery at Nationwide Children's Hospital.  He loves caring for patients with craniosynostosis and cleft lips/palates.

















With the help of her grandmother, soprano Chelsea Buyalos developed a love for music at the age of four; a love that was sparked by Puccini’s Tosca. This love blossomed and soon led to the start of her formal training at the age of eleven in her small town of Chester, Virginia. In 2005 Ms. Buaylos made her operatic debut in Italy with Operafestival di Roma in their main stage production of Mozart’s Le nozze di Figaro. In recent years, Ms. Buyalos has been featured as a soloist in concert works such as Mozart’s Requiem, Rossini’s Petite messe solennelle, and Rutter’s Requiem. Chelsea received both her Bachelor’s and Master’s degrees in Vocal Performance from the Peabody Institute of the Johns Hopkins University (Baltimore, MD)She maintains an active private studio in downtown Baltimore and continues to foster music education in her community as Vice-President of the Baltimore based non-profit Mobile Music NOW! Inc. As a member of the craniofacial community who has lived with Goldenhar Syndrome, Chelsea frequently shares her story with others and recently became a member of the Children’s Craniofacial Association’s Speakers’ Bureau. Remember to always #ChooseKind! For more information about Chelsea visit: www.chelseabuyalos.com. 


Jerry Carchi is a jack of all trades but master of one, which is his love for his wife, daughter, and the CCA Family. Jerry has roots in Hoboken and now he resides in Ho-Ho-Kus, NJ. Jerry is a self-published author who was inspired to write a children's book about his daughter Sydney, who was born with Pfeiffer Syndrome. Jerry is a Zumba instructor at his local YMCA and Co-Director of a special needs program called Shining Star Express. Jerry has a passion for the art of laughter, love, and happiness, and he uses this energy in everything he does. Jerry is looking to impact the next generation with a positive message of love, acceptance, and kindness for all. 

David Roche, Inspirational Humorist

David is an inspirational humorist, keynote speaker and performer who has transformed the challenges and gifts of living with a facial difference into a compelling message that uplifts and delights audiences around the world. With the publication of his first book, The Church of 80% Sincerity, he is also an author.

David presents keynote speeches, humor and entertainment at conferences, meetings and fundraisers for corporate events, and for associations, non-profit, educational and disability organizations.