April 15th, 2013 | The Heads Up!!! Foundation recently donated $3,000 to the Cleft and Craniofacial Program at Riley Hospital for Children at IU Health. The gift will pay for the purchase of the “Craniofacial Family Notebook” which is given to parents of newborns at their first clinic visit. The notebook contains valuable educational information about… Continue Reading
What resources are available?
Many medical centers have support groups for parents with babies who have Pierre Robin sequence. These groups meet on a routine basis to share experiences and concerns. Many parents find it helps to talk with someone else who has a baby with the same problems.
The American Cleft Palate-Craniofacial Association (ACPA) is a group of professionals (including plastic surgeons, pediatricians, geneticists, dentists, oral surgeons, orthodontists, speech therapists, nurses and other specialists) who care for babies with cleft palates and other craniofacial abnormalities. This association is dedicated to establishing standard guidelines of care. The association also produces educational materials and booklets. They can also help you find a local craniofacial team. You can contact their national office at:
American Cleft Palate-Craniofacial Association
1504 E. Franklin Street, Suite 102
Chapel Hill, NC 27514-2820
You may also contact the 24-hour Cleftline for booklets and information about treatment teams and parent-patient support groups in your area.
The Children’s Craniofacial Association (CCA) addresses the medical, financial, psychosocial and educational concerns of a baby with a facial abnormality. The national office can be contacted at:
Children’s Craniofacial Association
13140 Coit Road, Suite 517
Dallas, TX 75240
AboutFace is a national organization that helps families who have children wih a cleft or facial difference. They provide information such as newsletters, videos and educational materials. For more information contact:
123 Edward Street, Suite 1003
Toronto, ON M5G 1E2
The Pierre Robin Network is a not-for-profit organization dedicated to supporting and education individuals with an interest in Pierre Robin sequence. These individuals include parents, adults with PRS, family members, caregivers and professionals.
Pierre Robin Network
Quincy, IL 62305
Wide Smiles was formed to ensure that parents of cleft-affected children do not feel alone. Support, inspiration, information and networking for families is offered.
P.O. Box 5153
Stockton, CA 95205-0153
Ameriface provides educational and emotional support to those who have been born with a craniofacial anomaly and their families.
P.O. Box 751112
Las Vegas, NV 89136