Friday, June 25, 2021

Retreat Virtual Swag Bag

 What's in our swag bag this year? 

During an in-person retreat everyone gets a "Welcome Bag" with tons of treats from friends and sponsors. This year we did a virtual bag for you full of fun. 

Click and shop our amazing "swag bag" in this email with discounts and incentives. 

We hope you'll support these vendors, who've partnered with us!


This year has been tough, but we feel that good things are here and more are coming! Proclaim your positivity with these limited edition CCA items, designed by CCA Adult & Artist, Jennifer Johnson. SHOP


CCA Mom, Maigan Baker, has helped us curate a wish list for our CCA Care Packages of Usborne books, plus you can stock up on books for your family, too! Shop for yourself here, or donate to our wish list


Once again, Kendra Scott is giving back 20% of sales this Friday and Saturday to CCA Kids! Plus, for every Watercolor Ari Heart necklace purchased, an extra $10 will be donated to CCA. 


ConnectMed’s Camp Cosmos Programs provide a supportive, inclusive and fun setting for children with craniofacial differences and their families to interact with, support, befriend and inspire each other, and to access guidance and resources from volunteer therapists, social workers, speech and language pathologists, and healthcare providers. Learn more here.


Each year, thousands of our myFace friends gather together - online and in person - to raise support and critical funding for the craniofacial community at Races for Faces.​

Historically held as an in-person 5k walk, Races for Faces went virtual in 2020 to help keep our communities safe.

And thanks to your overwhelming support for last year’s virtual event from across the country, Races for Faces will continue to include virtual participation in 2021 and beyond!

Thursday, June 24, 2021

#ThankfulThursday: Thank You To All Our #CCAVirtualRetreat2021 Sponsors

Please visit all of our sponsors in the Virtual Exhibit Hall

and thank them for supporting our Virtual Retreat 2021!

Thank you, ConnectMed International! 

ConnectMed (CMI) is a nonprofit that seeks to improve access to sustainable and full-service healthcare for children with craniofacial differences, especially those whose families struggle financially. Given evidence of the strong interconnectedness between the mind and body, CMI focuses on psychological, emotional, and social wellness, as well as physical health.  These factors are critical to treatment, medical outcomes, and long-term health, and ensure that children with differences reach their maximum potential and become their best possible selves.

CMI’s Camp Cosmos Programs are free, recurring, group-based sessions facilitated by a volunteer team of healthcare and/or educational professionals to provide: 

  • a supportive and inclusive environment that allows children with differences to interact with, befriend and inspire others like them;
  • support and resources for psychosocial and emotional health specific to this community, through play, games, art therapy, and group discussions;
  • strategies and therapeutic tools to cope in social situations, manage stress/anxiety, increase resiliency, etc.;
  • speakers living with chronic physical differences of their own to serve as mentors and role models; 
  • and most of all - FUN for the kids in a safe, judgment-free environment.
  • There are three types of Camp Cosmos Programs:  
  • “Day Camps”, which last about 5 hours. In 2021 and the foreseeable future, CMI is transitioning to hybrid “Camp Cosmos Weekends”, with one day of virtual activities and one day of in-person activities somewhere (for now) in San Diego, CA
  • Virtual “Family Meet-Ups”, which last 1.5-2 hours but take place more frequently.  
  • “Horsin’ Around” – an in-person horse therapy camp in Fallbrook, CA launched in 2021 in partnership with Mustard Seed Ranch and led by a therapist specializing in Equine Assisted Psychotherapy to address issues of social interaction, self-esteem, self-expression, stress and medical-related trauma.

For more information, please visit

or contact Executive Director Rita Albert at [email protected]

Thank you, American Cleft Palate-Craniofacial Association! 

ACPA works to support the care of individuals affected by cleft and craniofacial conditions. These patients require care from a variety of specialists over time, and ACPA optimizes outcomes for individuals with oral cleft and craniofacial conditions through education, support, research, and interdisciplinary team care. 

Children born with cleft lip, cleft palate or craniofacial conditions may require individualized treatment from infancy into adulthood. That care is best managed when a team of specialists from several healthcare disciplines works with the family to develop and follow a treatment plan. Cleft and craniofacial teams are composed of healthcare providers working together to address a variety of needs throughout a person’s life. For more information, or to find a team in your area, please contact [email protected]

Join ACPA as we create a world where people with oral cleft and craniofacial conditions thrive! 

Thank you, Children's Hospital of San Antonio

The Children’s Hospital of San Antonio with its academic partner Baylor College of Medicine is the largest freestanding, academic children’s hospital in South Texas. 

Thank you, UF Health!

Leading treatments, comprehensive care for adults and children with craniofacial conditions 

The University of Florida Health Craniofacial Center 

The University of Florida Health is dedicated to the care of individuals with cleft palate and other craniofacial conditions. Through our craniofacial center, patients come to one location to access a full range of specialists who closely collaborate to find the best possible solution for each patient. 

The comprehensive care team at the UF Health Craniofacial Center includes health professionals in pediatrics, surgery, neurosurgery, clinical psychology, speech-language pathology, otolaryngology, audiology, nursing, oral and maxillofacial surgery, social work, pediatric dentistry and orthodontics.  When additional services are needed, a broader range of UF Health specialist are available in our hospital and outpatient clinics. 

Our team strives to meet all the health care needs of our patients with craniofacial conditions in an easily accessible way. Family members are also part of our team and find comfort in clear communications from caring professionals. 

We are committed to finding solutions for people with craniofacial conditions through treatment, innovative research and education of future generations of physicians and health care professionals. Academic health centers, like UF Health, make discoveries that lead to breakthroughs in patient care and often offer innovative treatments, through clinical trials, not often available in other places.

UF Health in Gainesville, Florida, is home to seven hospitals, including the award-winning UF Health Shands Children’s Hospital.

Visit for more information.

Visit to learn more about our expert care team.


Thank you, myFace

For 70 years, myFace has been dedicated to changing the faces – and transforming the lives – of children and adults with facial differences by providing access to holistic comprehensive care, education, resources and support that pave the way for better outcomes.

•Through support of the myFace Center for Craniofacial Care at NYU Langone Health, myFace ensures that individuals and families have access to state-of-the-art, personalized team care.

•myFace also provides direct services that meet the day-to-day needs of the craniofacial community, including peer led support groups, delivery of craniofacial newborn care kits, complimentary flights and housing for out-of-town families seeking treatment in NYC.

•myFace provides access to education through topic-specific webinars, workshops, online resources and content, and strives to raise critical public awareness about craniofacial differences through programs such as its Wonder Project which helps to educate others on the importance of celebrating uniqueness and always choosing to be kind.

•myFace aims to provide individuals and families with the care, tools and information they need to successfully navigate their journey and let them know they are never alone.


Thank you, also to DePuy Synthes and Orthomerica

Tuesday, June 15, 2021

Shop Amazon Smile On The Go **QR Code Inside**


AmazonSmile is now available in the Amazon Shopping app on your iPhone.

Turn on to start generating donations in the app, at no cost to you.

How to turn on AmazonSmile: 
1)Join AmazonSmile
If you are not already an AmazonSmile member, sign up on your web browser. Simply select your favorite charity to start generating donations, at no cost to you.

2)Get the app
Download or update to the latest version of the Amazon Shopping app on your phone. You can find it in the App Store for iOS or Google Play for Android.

3)Turn on AmazonSmile
Open the app and find ’Settings’ in the main menu (☰). Tap on ‘AmazonSmile’ and follow the on-screen instructions to turn on AmazonSmile on your phone.
Step by Step
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QR Code
Turn AmazonSmile ON now
Scan the QR code using your phone's camera and follow the on-screen instructions. It's that easy!
Learn more
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Sunday, June 6, 2021

NORD Rare Disease Virtual Forum June 26 and June 27th


Our friends at NORD are hosting a Rare disease interactive forum on June 26-27, 2021. This occurs at the same time as CCA's Annual Retreat and Educational Symposium. Still, we wanted to share this important information with you. Attend some of our sessions and some of NORDS to really round out the weekend. Both events are virtual. Parents, patients, caregivers, physicians and more are welcome at the NORD Forum. Learn more about it in this blog post. 

Attend the rare disease patient and family event of the year: the 2021 Living Rare, Living Stronger™ NORD® Patient and Family Forum (June 26-27), a two-day interactive virtual conference filled with learning, connecting and fun, also featuring the inspiring Rare Impact Awards (June 28). The agenda includes sessions in which patients and their families can gain insight and practical tools for living their best lives with rare diseases, with workshops provided for newly-diagnosed patients, long-term patients, caregivers, siblings, physicians and medical students. The Forum will feature interactive Q&As, inspiring online panels presented by patients, caregivers and top rare disease medical experts—plus surprises! 

To view the agenda, learn more or register, click here:

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