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Memory & Brain Health (coming soon)
Caregiving (coming soon)
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Resources (coming soon)
Our Story and Legacy (coming soon)
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CLEFT CARE
Resources &
What We Built
A short list of resources we trust, and a look at what our team built together
Resources for Cleft Families
This list is short on purpose. Everything here is something we know, have used with families, or comes from people who have walked this road themselves.
Books from our community
Written by people we know: parents, clinicians, and people with lived experience.
Ava The Brava
About the book: Big brother loves to teach and take care of his little sister, Ava. When she needs surgery, he knows she will be okay because he taught her to be brave, and he will help her while she heals. Through words and pictures, this rhyming book for children shares the story of a big brother who vows to help his sister when she undergoes surgery to address her cleft lip and palate.
Why I recommend it: Ava the Brava was written by Allie, a mom who knows the cleft journey firsthand. I met Allie at one of our symposiums, and she went on to help shape our Buddy Program (see What We Built below). Her book carries the same honesty and heart she brings to everything, and it’s one I’m proud to share with families.
Now Is the Journey: Volume I
by Vanessa Acero, LPC; illustrated by McKenzie Bergenback, Clinical Anaplastologist
A therapeutic workbook made specifically for children with craniofacial differences, including cleft. Through guided activities, kids explore their feelings, practice calming their bodies, and build confidence to speak up for themselves at medical, therapy and school visits. It includes guidance for parents and clinicians.
[Amazon link]
Why I recommend it: Dr. Acero and I met at one of our symposiums and, through a shared wish to support this community, became friends and collaborators. She joined us as one of our scholarship therapists: a gifted clinician who also has lived experience with a craniofacial condition, which gives her a rare understanding of what children and families are navigating. This workbook brings that same insight into families’ hands.
Support & Connection: Cleft and Craniofacial Support Groups
Connecting with others who understand the cleft and craniofacial experience can be valuable for both individuals and families. The organizations below offer opportunities to connect with others, share experiences, ask questions, and find support around both the medical and everyday parts of living with cleft or a craniofacial condition.
These groups and resources are provided by outside organizations and are not affiliated with or maintained by our former clinic. Programs, meeting information, and links may change over time.
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Cleft Connect Chat: Monthly virtual peer group for teens through university students with cleft conditions, focused on connection, communication skill-building, and peer support, facilitated by adults with lived experience. Offered in English and Spanish.
Cleft Connect Parent Chat: Monthly virtual peer support group for parents of children with cleft conditions, focused on sharing experiences, practical advice, and mutual support, with guidance from experienced parent mentors.
To join, go to the website and click “Register for a chat”: operationsmile.org/…/cleft-connect-chat
Contacts:
Brigette Clifford, AVP of Operation Smile Student Programs · brigette.clifford@operationsmile.org · (757) 412-8500
Ethan Richlak, student volunteer · ethan.richlak@intern-operationsmile.org · (440) 867-8144 -
For teens and adults with craniofacial conditions
Drama Therapy Group for Youth (ages 10–14): A small monthly group focused on creative expression and emotional exploration through role-play, storytelling, and improvisation in a supportive setting.
Adolescent Support Group (ages 14–18): Monthly peer support with facilitated discussion around stress, coping, emotions, peer dynamics, and disclosure, along with interactive games.
Adult Support Group (18+): Biweekly peer support focused on shared experiences, relationships, career concerns, emotional regulation, and navigating care in adulthood.
For parents
Prenatal and Infant Parent Support Group: Monthly group for expectant parents and parents of infants (up to age 1), with facilitated discussion around diagnosis-related concerns, preparing for a baby’s arrival, navigating early medical care, stress management, emotional regulation, and family dynamics.
Parent Support Group: Facilitated discussion around parenting challenges, supporting a child with a facial difference, sibling and family dynamics, emotional regulation, stress management, and effective communication.
Grupo de apoyo para padres españoles: Grupo de apoyo para padres hispanohablantes de niños con una diferencia craneofacial, que ofrece un espacio seguro con conversaciones guiadas sobre la crianza, el apoyo a los hijos y hermanos, la dinámica familiar, la regulación emocional, el manejo del estrés y la comunicación efectiva, con el acompañamiento de un facilitador de habla hispana.
All groups: myface.org/online-groups · For more information, email Dina Zuckerberg: Dina@myFace.org
Trusted organizations
American Cleft Palate Craniofacial Association (ACPA). Family information and a directory of ACPA-approved teams in the U.S. and Canada. acpacares.org
ACPA Family Resources. Free, expert-written booklets for every stage of care, from feeding to the teen years (many in Spanish), help with paying for treatment, and a family support line.
Books from our community
Written by people we know: parents, clinicians, and people with lived experience.
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Ava The Brava
About the book: Big brother loves to teach and take care of his little sister, Ava. When she needs surgery, he knows she will be okay because he taught her to be brave, and he will help her while she heals. Through words and pictures, this rhyming book for children shares the story of a big brother who vows to help his sister when she undergoes surgery to address her cleft lip and palate.
Why I recommend it: Ava the Brava was written by Allie, a mom who knows the cleft journey firsthand. I met Allie at one of our symposiums, and she went on to help shape our Buddy Program (see What We Built below). Her book carries the same honesty and heart she brings to everything, and it’s one I’m proud to share with families. -
![Now is the Journey]()
The American Cleft Palate Craniofacial Association (ACPA)
Now Is the Journey: Volume I
by Vanessa Acero, LPC; illustrated by McKenzie Bergenback, Clinical Anaplastologist
A therapeutic workbook made specifically for children with craniofacial differences, including cleft. Through guided activities, kids explore their feelings, practice calming their bodies, and build confidence to speak up for themselves at medical, therapy and school visits. It includes guidance for parents and clinicians.
[Amazon link]
Why I recommend it: Dr. Acero and I met at one of our symposiums and, through a shared wish to support this community, became friends and collaborators. She joined us as one of our scholarship therapists: a gifted clinician who also has lived experience with a craniofacial condition, which gives her a rare understanding of what children and families are navigating. This workbook brings that same insight into families’ hands.
