RESOURCES TO HELP FAMILIES THRIVE

 

 VCFS RESOURCES

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

 

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MISSING GENETIC PIECES

Strategies for Living with VCFS, The Chromosome 22q11 Deletion

CLICK ON BOOK COVER ABOVE TO GO TO BOOK PAGE FOR ORDERING

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 If you find links that are no longer active, we apologize and would appreciate an e-mail to let us know.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
Cognitive Analysis & Brain Imaging Laboratory

http://cabil.mindinstitute.org
Tony J. Simon, Ph.D., Associate Professor of Psychiatry & Behavioral Sciences
University of California, Davis

Email: tjsimon@ucdavis.edu
Tel. 916-703-0407, Fax. 916-703-0244
M.I.N.D. Institute

2825 50th Street, Rm. 2341
Sacramento, CA 95817


Velo-Cardio-Facial Syndrome Educational Foundation

Phone (732) 238-8803   Toll Free 1-866-VCFSEF5 (1-866-823-7335)

e-mail info@vcfsef.org

VCFSEF, Inc., PO Box 874, Milltown, New Jersey   08850

www.vcfsef.org


22q11 Group in the UK

www.vcfs.net


VCFS Foundation Qld - Australia

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.

www.vcfs.com.au


Center for the Diagnosis, Treatment and Study

of Velo-Cardio-Facial Syndrome
Jacobsen Hall, SUNY Upstate Medical University
175 Elizabeth Blackwell Street, Syracuse, NY 13210
Phone (315) 464-6590  Fax (315) 464-6593


Tammy Rose
FACE 22; Families Advocating for Chromosomal Education
Phone: (724)776-0970,  Cell: (724)622-6096
megsmom008@aol.com

www.FACE22.org

Albert Einstein College of Medicine


The Rockefeller University


Children's Memorial Hospital,

22q11 deletion syndrome program

2300 Children's Plaza, Box 59, Chicago, IL 60614   Phone 773-880-4454

Dania M. D'Achille, MS Program Coordinator


Gene Clinics

http://www.geneclinics.org/profiles/22q11deletion/


Medical Needs of Children with VCFS

The 22q and You Center - Clinical Genetics Center The Children's Hospital of Philadelphia

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)

    New England Region
Maureen Anderson, 2 Lansing Drive, Salem, NH 03079
Phone (603) 898-6332   e-mail mladja@aol.com

Chromosome 22 Central

www.c22c.org


Below is a resource for disability benefits that may be helpful.

http://www.thesimpledollar.com/disability-benefits-guide/


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:

http://sunrisehouse.com/addiction-demographics/physically-disabled/

   

On-Line VCFS Support Groups

YAHOO Family Support Group


UK/EUROPE Support Group

   

Parent Support & Resources

(Not VCFS Specific)


BOOKS AND RESOURCES

 

 


http://www.our-kids.org

Devoted to raising special kids with special needs


National Parent to Parent Support and Information System
http://www.nppsis.org/


The Waisman Center: University Center for Excellence in Developmental Disabilities

http://www.waisman.wisc.edu


FACES: The National Cranialfacial Association

http://www.faces-cranio.org


National Society of Genetic Counselors

http://www.nsgc.org


National Fatherís Network
http://www.fathersnetwork.org/


National Information Center for Children and Youth with Disabilities
NICHCY

http://www.nichcy.org


Special Needs Advocate for Parents (S.N.A.P.)

Phone: 1-888-310-9889   e-mail: info@snapinfo.org

http://www.snapinfo.org


National Organization on Disability
www.nod.org


National Association for Child Development

www.nacd.org


Self Advocates Becoming Empowered

www.sabeusa.org


The Family Village
http://www.familyvillage.wisc.edu/  


Help for siblings of children with disabilities

Children's Hospital and Regional Medical Center/ Seattle, Washington
http://www.chmc.org


University of Kansas Schiefelbush Institute for Life Span Studies
http://www.lsi.ukans.edu/
lsi


Family Resource Guides

The ARC of the United States
http://www.TheArc.org


MUMS National Parent to Parent Network

http://www.netnet.net/mums/index.htm


Disability Resource Organization

http://www.disabilityresources.org/VELO.html


Focus Adolescent services

http://www.focusas.com/index.html


National Mental Health Information Center
http://www.mentalhealth.org/links/


Parents of Blind Children, Committee on the Blind, Multiply-Handicapped Child
www.nfb.org/nopbc.htm


Family Support Products for Special Feeding

http://www.beyondconception.com


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

http://www.irsc.org/


NIDCD

http://www.nidcd.nih.gov/health/voice/velocario.asp


DMOZ (Open Directory Project) http://www.dmoz.org/Health/Conditions_and_Diseases/Genetic_Disorders/

Velo-Cardio-Facial_Syndrome/


Meddie Health Search http://www.meddie.com/Conditions_and_Diseases/Genetic_Disorders/Velo-Cardio-Facial_Syndrome/index.html


Alliance coordinating offices:
PACER Center

(This is the Nationwide Center which can direct you to local Alliance Offices.)
1-888-248-0822 toll free number nationwide
www.taalliance.org


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08/31/16

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