Founded in 2009, The Cleft Lip & Palate Foundation of Smiles is a nonprofit organization devoted to educating families around the world about craniofacial anomalies, a category of birth defects that includes cleft lip and cleft palate.
Since its foundation, The Cleft Lip & Palate Foundation of Smiles has grown to a network of more than 25,000 families, all affected by craniofacial anomalies.
Support, Education, Advocacy & Research
With the foundation’s support, these families gain access to a host of vital services and educational resources. Beyond sharing personal stories and advice through the Foundation’s numerous forums, parents can use the organization’s extensive database to locate local support groups, as well as connecting with families across the globe.
Providing access to information is the cornerstone of The Cleft Lip & Palate Foundation of Smiles’ work. Extensive resources on the causes and potential complications of orofacial clefts allow families to work alongside a wide range of specialized practitioners as fully-informed partners in their child’s treatment. And by presenting the latest research in easy-to-digest guides, the Foundation informs families of recent scientific findings in regard to the often-complex relationship between orofacial clefts and commonly-prescribed prescription medications.
Cleft Lip & Palate Foundation of Smiles Programs
Through a number of charitable funds, the Foundation provides families in need the support they need to raise happy, healthy children.
IDEA & IEP Tips
The Cleft Lip & Palate Foundation of Smiles offers its members access to IDEA & IEP Tips – Parents to Parents for Children with Disabilities, a private support group of almost 6,000 parents committed to securing a “free appropriate public education” for their children.
The Individuals with Disabilities Education Act (IDEA) of 1990 acknowledged that many children benefit from unique, individualized education plans. The IDEA & IEP Tips support group allows families to share tips and guidance on leveraging IDEA’s provisions for every child’s benefit.
Weimer Bottle Fund
Many children born with orofacial clefts have special feeding needs. And while several manufacturers offer bottles designed specifically for babies with cleft lip and cleft palate, the products can be prohibitively expensive. Many insurance companies are unwilling to provide coverage for these bottles.
Through the generous donations of its members, The Cleft Lip & Palate Foundation of Smiles provides families these necessary bottles at no cost through its Weimer Bottle Fund.
Recipes From The HEART
Accepting recipes submitted by members, the Cleft Lip & Palate Foundation of Smiles is currently preparing a recipe book specifically intended for children with orofacial clefts, both before and after surgical repair.
Bring A Smile
By joining the Bring A Smile program, Foundation members can send personalized get-well cards to children who will undergo or have just undergone surgery in relation to their orofacial cleft.
Parents can enroll their children in the program, notify the organization of a surgery’s date and then receive personally-made cards from other children who have faced similar challenges.
Smile Leader Program
In volunteering for the Smile Leader Program, parents can become local ambassadors for The Cleft Lip & Palate Foundation of Smiles. Reaching out to regional schools, craniofacial teams and, most importantly, parents within their community, these volunteers work to connect families with the services they need.
Smile Leaders also serve as an essential conduit between their designated area and The Cleft Lip & Palate Foundation of Smiles itself. These volunteers provide local families access to the services and resources offered by the Foundation, as well as keeping the Foundation’s extensive range of State & International resources up-to-date.
All Smile Leaders follow The Cleft Lip & Palate Foundation of Smiles’ Code of Ethics.
About The Foundation
The Cleft Lip & Palate Foundation for Smiles’ founder, Rachel Mancuso, is the mother of three children. Her twin sons, Alfred Jr. and Michael, were born with cleft lip and palate, and she soon created the Foundation as a community for families going through similar challenges.
Among its board members, The Cleft Lip & Palate Foundation of Smiles counts Michael Monheit, Esq., an attorney based in Rydal, Pennsylvania. As the father of a daughter with pervasive developmental delays, Mr. Monheit “joined the board of The Cleft Lip & Palate Foundation of Smiles in order to offer [his] experience as a parent of a child with special needs.”