RESOURCES TO HELP FAMILIES THRIVE
FOR FAMILIES WITH 22q DELETION
Additional information on many of these listings as well as other resources are contained in the book:
Missing Genetic Pieces
HEALTH AND SAFETY BOOKS
EVERYTHING FAMILY &
"Mother of Family Ideas"
Strategies for Living with VCFS, The Chromosome 22q11 Deletion
This page is a work in progress because changes occur regularly and we do not get updates automatically.
We have not updated the links below on this page for some time. If you find links that are no longer active, we apologize and would appreciate an e-mail to let us know.
VCFS Specific Support
M.I.N.D. Institute & NeuroTherapeutics Research Institute
2825 50th Street, Rm. 2341
Velo-Cardio-Facial Syndrome Educational Foundation
Phone (732) 238-8803 Toll Free 1-866-VCFSEF5 (1-866-823-7335)
VCFSEF, Inc., PO Box 874, Milltown, New Jersey 08850
22q11 Group in the UK
The Velo Cardio Facial Syndrome Foundation Queensland was established to help and support groups of VCFS sufferers and their families, with the view to social contact, sharing information and educating people about VCFS.
FACE 22; Families Advocating for Chromosomal Education
Phone: (724)776-0970, Cell: (724)622-6096
Children's Memorial Hospital,
2300 Children's Plaza, Box 59, Chicago, IL 60614 Phone 773-880-4454
Dania M. D'Achille, MS Program Coordinator
Medical Needs of Children with VCFS
Search for "22q11" after clicking on this link and that will take you to The 22q and You Center.
Velo-Cardio-Facial Syndrome Institute (VCFS)
Below is a resource for disability benefits that may be helpful.
The information below does NOT refer to specifically to 22q11 deletions, but might be helpful in some situations.
Some physically disabled individuals suffer unique challenges with mental health, addiction and access to treatment.
While there are many unique mental health resources available, none of them are comprehensive and specifically tailored to the physically disabled. After research across the resources available on the web, the AAC team noticed the absence of a centralized resource designed to help understand the basics of mental health, alcohol use and addiction within this demographic and offer guidance on navigating support systems. They decided to fill this gap of knowledge.
The result is this page:
On-Line VCFS Support Groups
Parent Support & Resources
(Not VCFS Specific)
BOOKS AND RESOURCES
Devoted to raising special kids with special needs
National Parent to Parent Support and Information System
The Waisman Center: University Center for Excellence in Developmental Disabilities
FACES: The National Cranialfacial Association
National Society of Genetic Counselors
National Fatherís Network
National Information Center for Children and Youth with
Special Needs Advocate for Parents (S.N.A.P.)
Phone: 1-888-310-9889 e-mail: firstname.lastname@example.org
National Organization on Disability
National Association for Child Development
Self Advocates Becoming Empowered
The Family Village
Help for siblings of children with disabilities
Children's Hospital and Regional Medical
Center/ Seattle, Washington
Family Resource Guides
The ARC of the United States
MUMS National Parent to Parent Network
Disability Resource Organization
Focus Adolescent services
National Mental Health Information Center
Parents of Blind Children, Committee on the Blind,
Family Support Products for Special Feeding
Genetic Information and Patient Services, Inc. (GAPS) http://www.aspin.asu.edu/geneinfo/index.html
Includes listings of government health sites and a health database
IRSC Internet Resources for Special Children
DMOZ (Open Directory Project) http://www.dmoz.org/Health/Conditions_and_Diseases/Genetic_Disorders/
Alliance coordinating offices:
(This is the Nationwide Center
which can direct you to local Alliance Offices.)
Family Celebrations Family Holiday Ideas Family Member Directory Author Resources Speaking-Webinars
Everything Family / Winmark Communications Phone: (602) 789-9240 email@example.com
©2000-2015 Kas Winters, Winmark Communications All rights reserved.