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


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, 

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.


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 [email protected]

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.