Cleft lip palate links
Craniofacial links
Vascular Birthmarks
Links Related to Specific Conditions
Support Services Links
Links to Access Mental Health Services
Scholarships
Summer Camps
Cleft Lip Palate Links
Cleft Palate Foundation
Provides essential information and promotes research to enhance the quality of life for individuals affected by cleft lip and palate and other facial birth defects. website
Features a toll-free 24 hour hotline at 1-800-24-CLEFT
| College Scholarships for Students with Craniofacial Anomalies
The Cleft Palate Foundation is pleased to award a minimum of three $500.00 scholarships to full-time college students with craniofacial differences. Selection is based on past academic success, evidence of leadership skills and/or community and school involvement, as well as strong indications of future academic success. Students at any level may apply; however, preference is given to rising first-year students in any field and first-year graduate students in a field of study related to the management of craniofacial anomalies (for example: genetic counseling, speech-language pathology).
» Apply Online
Please call the National Office (800.242.5338) if you have any questions about the scholarship application or the online submission system. |
Cleft Advocate
Provides educational opportunities, on- and off-line support networks, social interaction and advocacy guidelines. Gives families the tools needed to obtain the best medical care from their cleft/craniofacial team and the best service from their insurer, while encouraging children, teens and adults with cleft lip and/or palate and other craniofacial anomalies to reach their highest level of self-esteem. website
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Craniofacial Links
About Face USA
Provides information, emotional support and educational programs to individuals who have a facial disfigurement and to their families. Resources include online fact sheets and a free newsletter for families. website
Changing Faces
Although primary focus is on disfigurements affecting the face, much of their work has relevance to disfigurements of other parts of the body. They address disfigurements of any origin, whether present at birth or acquired later in life. website
Children's Craniofacial Association
Dedicated to improving the quality of life for people with facial differences and their families. Addresses the medical, financial, psychosocial, emotional and educational concerns relating to craniofacial conditions. website
AmeriFace
AmeriFace provides information and emotional support to individuals with facial differences and their families. They increase public understanding through awareness programs and education. website
FACES
Provides information for families affected by craniofacial conditions. The site includes information regarding financial assistance. website
Friendly Faces
Started by the mother of a child with Treacher Collins syndrome who later adopted a boy with hemifacial microsomia. Provides information and networking to families of children with a facial difference. website
Jorge Posada Foundation
The purpose of The Jorge Posada Foundation is to reach out to families in need whose children are affected by Craniosynostosis and provide them with emotional support through the Foundation’s family support network. website
Stickler Involved People
Information, newsletter and annual conference for families affected by Stickler Syndrome. website
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Vascular Birthmarks
Vascular Birthmark Foundation
Birthmarks and Hemangiomas InterNETwork Support
Gianna's Wild Strawberry (a fictional story about a girl with a facial hemangioma)
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Specific Condition Links
Crouzon Syndrome - Crouzon Support Network
Apert Syndrome - Apert Support Network (Teeter's page)
Beckwith-Wiedemann Syndrome – The Beckwith-Wiedemann Support Network, Beckwith-Wiedemann Syndrome Website
CHARGE Syndrome - CHARGE Syndrome Foundation
Lymphangioma (cystic hygroma) - Cystic Hygroma and Hemangioma Online Support Group
Down Syndrome - National Association for Down Syndrome (NADS), National Down Syndrome Congress, National Down Syndrome Society
Freeman-Sheldon Syndrome - Freeman-Sheldon Syndrome Parent Support Group
Goldenhar Syndrome - Goldenhar Syndrome Support Network, Goldenhar Syndrome Support Network Mailing List
Moebius Syndrome - Moebius Syndrome Foundation
Nager and Miller Syndromes - Foundation for Nager and Miller Syndromes
Neurofibromatosis - National Neurofibromatosis Network
Congenital melanocytic nevi - Nevus Outreach
Parry-Romberg Syndrome - The Romberg's Connection
Pierre Robin Sequence - Pierre Robin Network
Proteus Syndrome - Proteus Syndrome Foundation
Scleroderma - Scleroderma Foundation
Stickler Syndrome - Stickler Involved People Official Web Site
Sturge Weber Syndrome - The Sturge-Weber Foundation
Treacher Collins Syndrome - TreacherCollins.org (Amie Osborn's Web site)
Treacher Collins Syndrome - A Personal View (Vicki Oliver-Macklin's Web site)
Velo-Cardio-Facial Syndrome (VCFS)
Shprintzen Syndrome, 22q11.2 deletion, DiGeorge Sequence)
Velo-Cardio-Facial Syndrome Educational Foundation, Inc.
CHROMOSOME 22 CENTRAL
Von Hippel Lindau Disease - Von Hippel Lindau Family Alliance
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Support Organizations, Networks, and Resources for Families
Care Connection for Children
Children’s Miracle Network
www.carepages.com/vcuhealth
IAMC (VCU International Adoption Medical Clinic)
National Organization for Rare Disorders (NORD)
Parents Helping Parents—The Family Resource Center (PHP)
Family Voices—Speaking for Children with Special Health Care Needs
Family Village—Disability-Related Resources
The National Information Center for Children and Youth with Disabilities
Parent Advocacy Coalition for Educational Rights (PACER)Ability Online Support Works
Birth Defect Research for Children, Inc.
The National Committee on Vital and Health Statistics
Easter Seals
March of Dimes
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Links to Access Mental Health Services
Research indicates that children with cleft lip or palate, or other craniofacial anomalies may experience psychosocial or emotional stressors. Other children may face learning challenges, or behavior problems. While many children born with a cleft or craniofacial exhibit great resilience, sometimes more support and help is needed.
Community Service Boards
Community Service Boards operate throughout Virginia and provide mental health services to all residents. These services include crisis intervention, case management, therapy, medication, evaluation, and referral to appropriate providers.
To search for the nearest community service board near you, go to
http://www.vacsb.org/csb-bha.html
Richmond Hospital Education Program (RHEP)
Educational consultation services within the VCU Health Systems to assist children between the ages of 2-21 with school challenges and performance issues. This state operated program requires a referral from a VCUHS physician or nurse practitioner.
Virginia Treatment Center for Children (VTCC)
Located on the VCU Medical campus. Offers inpatient hospitalization and outpatient services to children and adolescents up to the age of 17.
Virginia Treatment Center for Children accepts most major health insurance as well as Medicaid for our outpatient services.
- Inpatient services include acute hospitalization and inpatient evaluations (15 or 30 days stay). For more information contact: Diane Hammond, Admissions Director at Phone: 804.828.8822
- Outpatient services offered include individual or family therapy, medication management, and evaluations.
- Specialty clinics include Developmental Disorders Assessment, Co-occurring Disorders Clinic for substance abuse, and a Pediatric Mood Disorders Clinic
- For appointments, call 804-828-3137
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Children’s Hospital of Richmond
Serves children ages 0-21 years
Outpatient Therapy: Individual, family, groups
Outpatient Assessment: psychological, neuropsychological, and psychoeducational
For appointments, call (804) 228-5818
VCU Health System, Department of Neurology/Child Neurology
Children's Pavilion
1001 E. Marshall St, 1st Floor
Richmond, VA 23298
Phone: (804) 828-0442
Fax: (804) 828-6690
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Mental Health Emergencies and Crisis Intervention
- Local Emergency rooms
- Local Community Service Boards
- Inpatient psychiatric hospitals for children and adolescents
- Virginia Treatment Center for Children, Richmond
- Tucker’s Pavilion, Richmond
- Snowden, Fredericksburg
- Commonwealth Center for Children and Adolescents, Staunton
- Dominion Hospital, Falls Church
- Poplar Springs, Petersburg
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Caregivers of Children with Special Needs: Summer Camp Ideas
Determining what your child will do when school is out for the summer can be a daunting task. It can be even more challenging when considering opportunities for children with special needs.
The cold days of winter, may hardly seem like the time to think about planning summer experiences for your child. However, it is important to start looking early to avoid missing the best opportunities for summer fun and enrichment. Programs have limited capacity and delaying registration may result in your child’s placement on a waiting list or missing out on the opportunity he/she wants.
Start talking to your child now about what he/she wants to do for the summer. Summer programs can run the gamut, from educational day camps to weeklong overnight camps. When choosing a program it is important to consider each child’s individual needs and goals, which may include enhancing his/her education, developing social skills, or to simply have as much fun as possible.
Consider programs that enroll children with all levels of abilities and investigate programs thoroughly to ensure they will meet your child’s needs. Be sure to ask questions and tour the facilities. Most of all, talk to parents who have experience with a program you are considering.
Just remember to start planning early so that all the appropriate opportunities can be identified and evaluated.
Area Program Offerings include:
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