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HELPFUL LINKS

804-828-3042
craniofacial@mcvh-vcu.edu

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

Medical Grants

 

 

 


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:

Blackwater Outdoor Experiences
804-378-9006
http://blackwateroutdoor.com/

Exceptional Camp for Exceptional Kids
erinsmydra@yahoo.com

Camp Baker
804-748-4789
http://www.richmondarc.org
Hanover County Parks and Recreation
804-365-4692
http://www.co.hanover.va.us/parksrec
Camp Easter Seals Virginia
804-287-1007
http://www.va.easterseals.com
Henrico County Division of Recreation & Parks
804-501-7275
http://www.co.henrico.va.us/departments/rec/
Camp Lakey Gap
http://www.christmount.org/camplakeygap
Northstar Academy Day Camp
804-747-1003
http://www.northstaracademy.net/
Camp Virginia Jaycee
540-947-2972
http://www.campvajc.org/
Saint Joseph’s Villa
804-553-3232
http://www.stjosephsvilla.net/
Chesterfield County Department of Parks & Recreation
804-751-4134
http://www.chesterfield.gov
Unique Kids
804-794-8900
http://www.uniquekidsva.org
Dreamers’ Camp
(for adults w/ Asperger’s/HFA)
dreaminjoan@gmail.com
Voices Together at the Weinstein JCC
804-285-6500
http://www.weinsteinjcc.org/

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Medical Grants

United Healthcare Children's Foundation