Wednesday, July 17, 2019

#ThankfulThursday: Dougans Raise and Donate Funds From Pop-Up Fundraiser

L-R: Kara Jackman, Marketing and Communications Coordinator, Brisa Dougan, Conley Smith, Bethany Dougan, Erica Mossholder, CCA Executive Director, and Khadija Moten, Outreach Director


Conley Smith and Bethany Dougan from Bonham, Texas donated $146.13 after hosting a pop-up fundraiser for CCA in honor of Brisa Dougan. These budding entrepreneurs sold hot chocolate and cookies to guests at a local boutique during a rare, chilly, spring day in Texas.  The funds raised will go to CCA Kids in need of travel assistance to access quality medical care, distribution of educational curriculum, and social support and networking.

Thank you Conley, Bethany, and Brisa for donating to CCA Kids. You were a breathe of fresh air during a hot day at the office in June. We enjoyed talking to you about your softball tournaments and our #ChooseKind library. 

Keep up your fundraising ways, so you can keep changing the world. 

Friday, July 12, 2019

30 Stories 30 Faces 30 Years: Macey Atkins



Our family is proud to be a part of CCA because they help families like ours every day. When we felt alone and did not know a lot about Macey's condition, CCA provided what we needed. They provided informational resources, emotional, and financial support. Because of CCA we've connected with many families. We support each other through our everyday obstacles and provide resources through our experiences. CCA has helped educate the world about craniofacial anomalies. Because of their mission to spread awareness, countless children are receiving the appropriate diagnosis and getting medical attention early. 
-Stacey Atkins, Mother of Macey Atkins


Macey, and her mom, Stacey Atkins live in Zachary, Louisiana. Macey has been a part of our CCA family since she was born. Now, sixteen years later, Macey is a rising sophomore at Zachary High School who enjoys cheerleading, swimming, traveling, and all things fashion. Her true passion is dancing, which she has been practicing for thirteen years. As a family, the Atkins like to go to the movies, and eat at new restaurants. Her #SuperSib sister, Allyson, supports Macey through everything. Allyson will be a sixth grader in the fall. 

CCA has helped the Atkins family know the value of kindness. Stacy says. “As a parent it’s hard to see individuals treat her differently because of the way she looks. Macey brings an infectious, loving spirit to everyone she meets. She has taught me that no matter what you look like, no matter what your disability is, there should never be a limit put on what you can achieve.” 

Tuesday, July 9, 2019

#ThankfulThursday: Research Update from Seattle Children's





Editor's Note: Thank you to everyone who contributed to make this research study possible. Your lives, experiences, and opinions matter to the future of quality care for all people in the craniofacial community. This one and others have positive outcomes because of your contributions. Please help additional, ongoing research study opportunities by looking through to see if you qualify for any of these listed in this blog post.

Healthcare and Psychosocial Experiences of Individuals with Craniofacial Microsomia and Microtia


Daniela Luquetti (MD, PhD) at Seattle Children's Hospital, Craniofacial Center; University of Washington School of Medicine, Department of Pediatrics, Seattle, WA, USA.
Nicola M Stock (PhD) at Centre for Appearance Research, University of the West of England, Bristol, UK.
Carrie L Heike (MD, MS) at Seattle Children's Hospital, Craniofacial Center; University of Washington School of Medicine, Department of Pediatrics, Seattle, WA, USA.
Alexis L Johns (PhD) at Division of Plastic and Maxillofacial Surgery; Children's Hospital Los Angeles, Los Angeles, CA, USA.


Background

Craniofacial microsomia (CFM) affects approximately 1,100 babies in the U.S. each year. CFM is also known as Goldenhar syndrome, hemifacial microsomia or oculo-auriculo-vertebral spectrum. It is primarily characterized by underdevelopment of the ear and jaw and may be associated with additional congenital anomalies.  Medical and surgical treatments can be quite complex, involving multiple medical specialists and long-term follow-up. However, little is known about patients’ and caregivers’ experiences of healthcare.  
The objective of this study was to explore the diagnostic, treatment-related and early psychosocial experiences of families with CFM with the aim of improving future healthcare delivery.

Method

An online anonymous survey was used to collect data from nine adult patients and 42 caregivers of children affected by CFM.  Responses from the study participants were grouped into key themes by two psychologists.

Research Findings

The key themes related to diagnostic, treatment-related, and psychosocial experiences include:
  • Challenges with medical providers included poor treatment guidance, conflicting medical recommendations, and poor coordination among providers. Participants also believed medical providers lacked knowledge of CFM and often did not show empathy. 
Participants identified specific treatments which they had found helpful and expressed an appreciation for medical providers who communicated clearly when outlining treatment plans. Participants also wanted medical providers to better inform and involve patients in their own care, and respect their preferences, needs and values. They also want providers to have positive attitudes, and to provide reassurance, invest time, coordinate care, and allow for parental control. 
Suggestions for improving care included:  better communication and coordination in relation to treatment(s), making appropriate referrals, being better informed about CFM, and supporting patient advocacy.
  • Confusion about the causes of CFM was provoked by inaccurate or incomplete information about CFM. Some participants attributed CFM to random occurrence. Others suspected a genetic component, with some noting a pattern in the family.  
  • Stressors in the medical setting included difficulties accessing care, the burden of ongoing treatment, and a lack of insurance coverage. Participants suggested that health providers could assist with insurance coverage, be more geographically accessible, and connect patients to others with similar diagnoses.
  • Hearing difficulties were reported to have an impact across settings, and participants identified related concerns for language development. When asked specifically about hearing aid use, about 20% of caregivers reported that children were motivated by the benefit of improved hearing. When asked about ways to help promote hearing aid adherence, caregivers suggested introducing aids at a young age, adjusting for comfort, praising use of aids, practicing coping skills for questions about the aid, and using a reward system.
  • Teasing was reported to be a concern by just under half of participants. Self-awareness of facial differences began around age 3, and teasing at around age 6. Teasing often involved name-calling. Some children responded to the teasing by ignoring it, while others were upset or did not know how to respond. 
  • Sources of support included websites, family members and medical providers. Participants also noted that speaking with friends and communicating with others who have similar diagnoses could be helpful. Interestingly, one third of participants identified scientific research and articles as important for coping. 
  • Adults with CFM offered advice for children with similar diagnoses, including making informed medical decisions, having self-confidence, reframing their experience when they are teased, and openly communicating about their diagnosis. 
  • Caregivers had advice for new parents.  The most common one was reassurance that their child is a typical child. They described positive reframing, seeking CFM information and expert care, acceptance, and having patience to be helpful strategies. Additional advice was to seek online support, understand that it was normal to experience a range of emotions, and to be open about the diagnosis. They also advised caregivers to teach their children coping skills and confidence. 
  • Participants ranked “understanding diagnosis and treatment” as a top priority for future research.

Conclusions

This study showed that patients and caregivers value clear, empathic, and patient-focused communication and coordination of care.
The findings reinforce the importance of ongoing psychological assessment to plan interventions for those in need.  
Treatment of CFM could be improved by establishing diagnostic criteria and standardized treatment guidelines, as well as ongoing research and education about the causes of CFM. Treatment could also be improved by making providers aware of the value of a team treatment approach to CFM, and the location of resources in their area for ongoing treatment.

Dissemination

The findings of this study were shared with health providers at the annual conference of the American Cleft Palate-Craniofacial Association (US) and the Appearance Matters conference (UK) in 2018. Two articles have also been published in leading academic journals in the field (see below). 

Acknowledgments

Thank you to Ear Community, FACES: The National Craniofacial Association, Children’s Craniofacial Association and the Atresia-Microtia group for posting the survey and for their help with dissemination.  Most of all, thank you to everyone who took part in the study for sharing their experiences.

Contact

For more information please contact Daniela at luquetti@uw.edu

References

Luquetti DV, Brajcich MR, Stock NM, Heike, CL, Johns AL. Healthcare and Psychosocial Experiences of Individuals with Craniofacial Microsomia: Patient and Caregivers Perspectives. International Journal of Pediatric Otorhinolaryngology 2018; 107:164-175. https://www.ncbi.nlm.nih.gov/pubmed/29501301
Johns AL, Luquetti DV, Brajcich MR, Aspinall C, Heike CL, Stock NM. In their own words: Stakeholder’s perspectives on stressors, resources, and recommendations in craniofacial microsomia care. The Journal of Craniofacial Surgery. 2018; 29(8): 2198-2205.  https://www.ncbi.nlm.nih.gov/pubmed/30334912

Additional resources


#WonderWednesday: Mom and PJ Visit Manhattan Beach California Elementary School to Raise Awareness








PJ and his Mom Crystal visited Grand View Elementary School in Manhattan Beach California on May 30th about facial differences, anti-bullying, and empathy-building.

The students and staff at Grandview were so moved that they made a donation to CCA in PJs honor. There were a number of students in attendance for the presentation which featured Crystal speaking about PJ trials and triumphs living with Treacher Collins syndrome, just like Auggie in the book "Wonder."

CCA has children and parents from all over the country speak at local schools, scouting gatherings, and churches to spread the word about kindness.We share our stories and experiences in the hope that we influence children and teens in the audience to choose and be kind in their daily interactions with all people.

We are all beautifully different in our own way. Thank you, PJ and Crystal for helping us share this message through telling your story around the country.


Friday, July 5, 2019

A New Friend from the UK Shares Her Craniofacial Story

Editor's Note and Warning: This article came to us from Ella Davies, a CCA Kids Twitter follower. She is from the United Kingdom. In the UK they use the term "disfigurement" to describe facial differences. In an effort to keep this blog piece authentic and true to Ella's own words, I kept the use of the word "disfigurement." In the United States we prefer facial difference. With that said, please enjoy this heartfelt piece from Ella!

My name is Ella, I am 27 years old and I live in England. My craniofacial condition is craniofrontal nasal dysplasia.  
I have had 3 operations in total, the first 2 were when I was age 1 and then again at age 5. both operations were to allow normal development. The third operation was one I had a choice as to whether I wanted to do it. At age 18, the thought of another operation was a little daunting due to being older and understanding the procedure and also the risks that came along with having a major operation. I decided to have the operation done. My reason for my choice to have it done at the time seemed incredibly vain as the operation was cosmetic rather than functional or out of medical need.  After having the operation, I noticed a massive boost in my self-confidence and knew it was the right decision. 


I have had a hugely positive experience having a craniofacial condition. I loved school and in my whole school time I only had one incident of bullying. The reason I believe I had such positive school life was due to me doing a talk about my condition to my year group, detailing how I got the condition and the operations I had. By doing this I believe it took away people's curiosity and the awkwardness of asking questions. My school friends knew that they could ask me anything.  My positive experiences allowed me to continue education and gaining a Sports Coaching Degree at university. 

I also have a fantastic family and group of friends who have stuck by me and always allowed me to do the things I want to do. This is where I found my love for sport. Throughout my childhood, and now even in adulthood, sport provided me the chance to be part of a team. I was noticed more for my athletic ability rather than the way I looked. Sport just gave me the confidence I needed and helped me deal with social anxieties that often accompany having a disfigurement. 
I don’t want to say I have gone through my life without staring, pointing, and odd comments. Yes, those happen every day. However, I don’t let anyone get me down. I just smile and carry on with what I am doing. If I didn’t then I wouldn’t have graduated university, worked at a summer camp in New York, been employed since I was 15, and traveled to some of the most beautiful places in the world. 

I have recently joined a charity as a volunteer campaigner for Changing Faces, which is the UK's leading charity for people with a visible difference – a mark, scar, or condition that makes them look them different. Changing Faces raises awareness and challenges discrimination that people with a visible difference face. While I do this by sharing my positive story and let others know that having a disfigurement does not define you. or the way you want to live.

Thursday, July 4, 2019

Happy Independence Day! The Fourth is the first


Editor's Note: I love the Fourth of July. It is such a lovely holiday to celebrate family, friends, or yourself. I wrote a short piece for Spillwords two years ago about Independence Day. I am going to repost it below. I hope you enjoy the spirit of my words and the holiday. All my words are meant in good humor and tongue-in-cheek jest. (For the record...Yes, I do enjoy Christmas!) 

Happy Fourth, everyone!

By Kara Jackman

The Fourth of July is the best holiday ever. Christmas does not hold a balsam-scented candle to the Fourth in my power rankings of top 5 holidays.

1. Independence Day
2. Thanksgiving
3. New Year’s Eve
4. Columbus Day
5. Christmas Day

Never mind two through five. We will be here forever if we debate our feelings about all of these holidays. Let’s focus on why the Fourth is the first in my book.

You do you! There is no familial pressure to spend time with relatives. In short, it is not a forced holiday. You want to go hang out with friends or family? Have at it! You want to spend the day on the couch watching Netflix? No problem! This is a day without expectations. Though it is more fun with friends and family, wherever it is you end up, make sure you are doing what you want. If that isn’t in the Bill of Rights, it should be.

There is no obligation to buy anything for anyone. All you need to do is show up and possibly bring some pasta salad. Everyone loves pasta salad and it is easy to make. Watermelons are also easy to bring along. I saw a woman today walking down a city street eating a quarter of a large watermelon. She was clearly trying to get a head start on the impending holiday. Just get out there and share the food, beverage, or things that make you happy.

The weather is wonderful. There is no hunched, mad dash in the freezing cold from the car to the front door in July. Don a breezy sun dress over your bikini, or a pair of shorts, and you are ready to go to the party or stay on the couch. FYI, most people are in a much better mood thanks to the warm weather, so go ahead and venture out.

The music is way better. The music celebrating our nation’s birth far outshines Christmas music. We, the people, must endure Christmas music as soon as we step out of our Halloween costumes through to the dawn of the New Year. This is not the case with patriotic tunes like “America the Beautiful,” “Star Spangled Banner,” the “1812 Overture,” and even “Yankee Doodle Dandy” if you are so inclined. These songs are only heard during a handful of holidays, typically on the day of the celebration. We not beaten over the head with patriotic tunes. I always feel more patriotic and stand a bit taller because the words of many of these songs so perfectly describe who we are, and what we should embody, in this country.

The funny thing is I’m not even all that patriotic. I never served in the military. I don’t have a flag in my front yard (well, to be honest, I don’t have a front yard). I just love easy-going gatherings of friends and family, American history, warm weather, and good music. So please, I implore you, to enjoy this Independence Day because it is the best holiday of them all.

Tuesday, July 2, 2019

Dr. Francis Smith Receives Honorary Degree from Scotland's University of Dundee






On Thursday, June 20th Dr. Francis Smith received an honorary Doctor of Laws at the University of Dundee Dental School in Dundee, Scotland, in recognition of my life's work in craniofacial research and public engagement. 

Francis we are so proud of you. You are such am important part of our CCA community. Thank you for your ongoing research and advocacy for people born with craniofacial conditions. 

You truly exemplify hope and healing.




30 Stories 30 Faces 30 Years: Rob Gorecki





I’m Rob Gorecki. I’m 32 now, but I was two years old going on three when the organization was founded in 1989. Children’s Craniofacial Association (CCA) has been a part of my life since before I can remember.

I was born with Goldenhar syndrome which caused a facial cleft that affected my speech and left me with just one eye and one ear. I’ve had lots of craniofacial surgeries (my mother says she lost count after a couple dozen), from the time I was an infant through high school, while I was still on my parents insurance. I have a reconstructed, though non-working, left ear. I wear a prosthetic left eye. 



I was three years old when I met Cher backstage at her Heart of Stone tour in early summer 1990. This “meet and greet” was arranged by my neurosurgeon who was on CCA’s Medical Advisory Board. Cher had become the organization’s Honorary Chair/Spokesperson after she portrayed the mother of a boy with a craniofacial condition in the movie, Mask.

My mother and I were among families gathered by the organization to attend a special event the following September in Washington, D.C. We addressed a Congressional hearing focused on insurance coverage needs and toured Washington D.C. together. The event featured a fundraising dinner and auction with Cher, who also went with us to the White House. We kids were invited to spend private time with Cher later in her hotel room and the moms joined those of us too little to be alone. The parents shared with Cher how wonderful it was to be able to relax among the other families while touring the city, exposing our facial differences to the usual staring and whispers of passersby. None of us were even conscious of any of it while in the group of about ten families; we were insulated because we were together.



It was Cher who suggested we gather again for some sort of camp or retreat in order to feel that supportive strength at least once a year. Yes, Char Smith was there too, and she only needed to hear that once. The very first retreat was the following June in Orlando, Florida and I am still friends with most of those families we first met in Washington D.C. Some of us also appeared on the Maury Povich Show with Cher the following year and still participate in CCA activities, especially the Retreat. The Annual Retreat is really like a big family reunion.

I’ve also liked motorcycles for as long as I can remember – maybe because I live in the Milwaukee area, home of the Harley. Every year, the Retreat weekend became our family vacation. During these vacations, I would get to visit the local Harley-Davidson dealership in the different retreat destinations, in order to add to my pin and patch collection for my “biker” vest.




Because my “biker” aspirations were well-known, in 2000, when CCA started a motorcycle raffle, I became the charity representative, the “poster boy,” for the event. In just five years we traveled to Sturgis, South Dakota for the raffle during my teens, I met a lot of famous people and made a lot of friends in the motorcycle industry. I even learned to ride a motorcycle and was gifted my first bike out there. Those connections I made through the organization inspired me to travel across the country to attend MMI (Motorcycle Mechanics Institute) in Phoenix, Arizona after high school graduation.

I also attended Cher Conventions every other year from 2000-2008 with another longtime friend, Scott Guzzo, and we met many Cher fans who were raising funds to benefit Children’s Craniofacial Association in her honor. I was happy to represent CCA there and at many other fundraising events throughout the years.

The Cher fans still know and support me as friends today, almost 20 years later. 


I think having CCA’s support while I was growing up made a big difference in my life. I’ve only missed one Retreat, I met other kids like me, and my entire family found comfort in knowing we aren’t the only ones dealing with some of the common problems we share living with facial differences.

Knowing I had that “extended family” from CCA through the years bolstered my resolve to just be myself and to go out and live my life. I’ve traveled all over, twice to Europe, once by myself, with confidence that I can do anything any other average person does. I am not afraid to go out into the world, and I hope I inspire younger kids facing similar challenges to do the same.