Having a child born with a craniofacial syndrome has been a challenge for our family. Early on there was so much uncertainty. We felt isolated and alone in our situation. Once we found the Children's Craniofacial Association (CCA), things began to change. Through their website and social media channels we learned so much information not only about our child's condition but were impacted by the powerful stories of others. The organization is professional, respectful and goes above and beyond to be inclusive. in June 2022 we traveled to their annual family retreat, which absolutely was the highlight of our Summer. For the first time in a very long time we felt included and bolstered in our experience as we met other families who have similar experiences. CCA's retreat was extremely well planned, thought out and executed with absolute professionalism. Our family could not be more grateful to CCA.
I was first involved with CCA when their annual retreat took place in St. Louis, MO and our Cleft Lip/Palate and Craniofacial Team was asked to present at their retreat. Our team really enjoyed presenting to kids and families across the country at their retreat!
Next, our Cleft Lip/Palate Team partnered with CCA to offer advanced screenings in two theaters to our local cleft lip/palate and craniofacial patients. Our patients and families had an amazing experience! We were able to provide them all with goody bags, extra speakers/presentations before the movie, a professional photographer and posters from sponsors (quite the red carpet experience)! It’s my understanding CCA partnered with many other teams for this experience in other cities as well, giving many more people amazing experiences like this!
Finally, I contacted CCA last year to become a speaker for their Speakers Bureau. I have included a note from one of the teachers from a presentation I gave.
As a person born with cleft lip and palate and then having worked in the field, CCA has given me so many incredible opportunities to help others, to create awareness and to spread kindness! It is a wonderful organization with a beautiful mission!
Review from Guidestar
CCA has been a special part of our family for the past 17 years. We truly are grateful for finding out about CCA and their retreats. Our family benefits in many ways from attending the CCA retreats. These retreats are an amazing weekend-long experience that the CCA staff provides and works so hard all year just for us families. We have made life-long friends and are educated thru the symposiums that are offered. The CCA retreats have given our son with Apert Syndrome -much confidence and a weekend where he feels totally accepted. The retreats are just as beneficial for his two siblings as they are for him. We started attending the retreats when our children were young and we all still attend as a family. Beginning the last day of each retreat we look forward to next year’s retreat. We can’t imagine this life-journey without Annie, Erica and all the CCA staff and the amazing retreats they provide each year for us and all the families.
CCA has been a special part of our family for nearly 20 years. We first connected with the staff when looking for education and support. We received all that and so much more. CCA is like an extended family and the retreats feel like an annual reunion. I am grateful that both of my boys have benefited from growing up with this organization that recognizes the special role siblings play in families like ours. We are all strong and more resilient people from being involved with this special organization.
I first learned about CCA 30 years ago through our craniofacial surgeon. CCA has been beneficial not only for myself but for my children - the one affected by a craniofacial issue as well as his sibling, The annual retreats allowed my children to be kids and hang out with their peers. My children looked forward to the retreats, they would see friends they met the previous years (pre social media) and have remained friends since. CCA is a good resource for families who are new to the craniofacial family as well as those who have been members for years.
CCA has been a part of our family for the past 28 years. We have attended over 20 retreats, only missing ones because of surgery. My children are grown now but we still attend retreats as a family, always looking forward to the next one when the previous one has ended. The empowerment all of my children have received because of CCA is immeasurable. They have forged confidantes, friendships and connections that have truly been the best thing in their lives. My affected son met his wife at a retreat! As parents, we made connections, shared experiences and watched others grow in the organization. There were about 25 families at our first retreat and we have watched this organization grow into over a 150 families at a retreat. I am certain that my grandchildren will be empowered by this organization in the same way we were.
Review from Guidestar
An amazing organization that gives so very much back to its family of members. My life is better for being part of this nonprofit. I have made lifelong friendships, and feel they go the extra mile for everyone. The staff has always been very high touch and hands on, always attentive to my needs as an adult with a craniofacial condition.
In 2016, I started volunteering for them, writing blog content. Now I work part-time as part of the staff to help shape our marketing and communications strategy.
Thank you so much for all your hard work, CCA! Thank you for welcoming and accepting me with all my flaws, both as part of the community and as a part-time staff member.
#ChooseKind
Wonderful organization offering my daughter and our family support since 2013! It is amazing what CCA has done for our community.
Our family has been a part of CCA since 2006 when my grandson was born with a bilateral cleft lip and palate. Could not have made it without them!