Resources for families

Below is a list of information, organizations and opportunities we’ve found to be helpful for our families during their medical journey. Our list includes articles from our specialists; educational videos; websites offering information/support for children with craniofacial conditions and their families; support organizations, networks and mental health services in our region; and details about scholarships, medical grants and camps.

Articles/books

• Extra comfort, cuddles and other ways to reduce anxiety before surgery
• Preparing for surgery as a family
• Preparing your child for surgery
• Reading resources (Book recommendations for children and families)
• Working together: FAQs about surgery and choosing a surgeon

Videos

• Feeding your baby - Instructional videos from the American Cleft Palate-Craniofacial Association. Spanish versions available.
• Teens talk about their craniofacial differences - Video made by one of our craniofacial patients. He interviewed young people with craniofacial differences to find out how they felt about their condition and how it has impacted their life.

Websites

Cleft and craniofacial differences

• 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. 
• American Cleft Palate-Craniofacial Association (ACPA Family Services)
  Provides essential information and promotes research to enhance the quality of life for individuals affected by cleft lip and palate and other facial birth differences. Features a toll-free 24-hour hotline at 1–800–24–CLEFT.
• ACPA Family Services is pleased to award scholarships to full-time college students with craniofacial differences. Selection is based on past academic success, leadership, community and/or school involvement and indications of future academic success. Students at any level may apply; however, preference is given to rising first-year students in any field and currently-enrolled students in a field of study related to cleft or craniofacial conditions (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.
• CAPPSKIDS.org
  A parent-directed website supporting parents and families with plagiocephaly and craniosynostosis. CAPPS stands for Craniosynostosis and Plagiocephaly Support.
• Cleft advocate; ameriface
  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. Encourages children, teens and adults with cleft lip and/or palate and other craniofacial differences to reach their highest level of self-esteem. 
• 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. 
• FACES
  Provides information for families affected by craniofacial conditions. The site includes information about financial assistance. 
• The International 22q11.2 Foundation Inc.
  Works to improve quality of life for individuals affected by chromosome 22q11.2 differences through family and professional partnerships. 

Vascular birthmarks and malformations

• Vascular Birthmarks Foundation
  Information, support, resources and networking for individuals with vascular birthmarks and associated syndromes.

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Other specific conditions

• Beckwith-Wiedemann syndrome - The Beckwith-Wiedemann Support Network
• CHARGE syndrome - CHARGE Syndrome Foundation
• Crouzon syndrome - Crouzon Support Network
• Goldenhar syndrome - Goldenhar Syndrome Support Network
• Moebius syndrome - Moebius Syndrome Foundation
• Nager and Miller syndromes - Foundation for Nager and Miller Syndromes
• Neurofibromatosis - National Neurofibromatosis Network
• Parry-Romberg syndrome - The Romberg's Connection
• Scleroderma - Scleroderma Foundation
• Stickler syndrome - Stickler Involved People Official website
• Sturge Weber syndrome - The Sturge-Weber Foundation

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Support organizations and networks

• Birth Defect Research for Children, Inc.
• Care Connection for Children
• Children’s Miracle Network
• Easter Seals
• Family Voices—Speaking for Children with Special Health Care Needs
• IAMC (VCU International Adoption Medical Clinic)
• March of Dimes
• National Organization for Rare Disorders (NORD)
• Parent Advocacy Coalition for Educational Rights (PACER) Ability Online 
• Parents Helping Parents—The Family Resource Center (PHP)
• The National Committee on Vital and Health Statistics

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Medical grants

• United Healthcare Children's Foundation
  Their mission is to improve children’s lives and help families gain access to the care they need through medical grants.

Mental health services

Research shows that children with cleft lip, cleft palate or other craniofacial differences may experience psychosocial or emotional stressors. Some may also face learning challenges and/or behavior problems. Sometimes, more support and help are needed. Below are programs in our region that can help with these types of issues.

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 vacsb.org.

Virginia Treatment Center for Children (VTCC)

This inspirational facility offers inpatient hospitalization and outpatient services to children and teens with mental and behavioral health care needs. VTCC accepts most major health insurance plans as well as Medicaid. To learn more or for appointments: (804) 828-3129.

Brook Road Campus psychology services

Psychologists on our Brook Road Campus specialize in working with children from birth to age 17 who have psychological needs related to medical, emotional and behavioral issues and neuropsychological needs following a neurological injury or illness. They provide individual and family and therapy, behavioral consultation, and psychological, neuropsychological and psychoeducational evaluations. For appointments, call (804) 228-5818.

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Camps

Seasonal camps

Some camps are offered at different times throughout the year (not just summer) for children with speech needs and specific craniofacial diagnoses. To learn more about these camps, please directly contact the Center for Craniofacial Care.

Summer camps

Determining what your child will do when school is out for the summer can be a big, but rewarding, job. The process 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’s 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.

Start talking to your child early in the year about what they want to do for the summer. Summer programs can range from educational day camps to weeklong overnight camps. When choosing a program, it’s important to consider your child’s individual needs and goals. These may include enhancing their education, developing social skills or simply having 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’re 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
blackwateroutdoor.com

Camp Baker
804-748-4789

Camp Easter Seals UCP
804-287-1007
https://eastersealsucp.com/

Chesterfield County Department of Parks & Recreation
804-751-4134
chesterfield.gov

Exceptional Camp for Exceptional Kids
erinsmydra@yahoo.com

Hanover County Parks and Recreation
804–365–4692
https://www.hanovercounty.gov

Henrico County Division of Recreation & Parks
804-501-7275
henrico.us/rec/

Northstar Academy Day Camp
804-747-1003
northstaracademy.net

Voices Together at the Weinstein JCC
804-285-6500
weinsteinjcc.org

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