Directory of Resources
Special Links
Dawn Koontz, Ph.D
Clinical Psychologist for children and adolescents with special needs
http://mychildpsychologist.com/about/
The Dempster Foundation
http://www.dempsterfamilyfoundation.org/
Gerald R. Clark, M.S.E.E.
http://www.jjclarkfoundation.org/
Donna Cutler–Landsman, M.S.
http://www.cutler-landsman.com/
Paul Greenland
http://22qstories.com/default.aspx
Kas Winters
http://www.everythingfamily.net/
Our Special Partners
22q Ireland
Max Appeal–Advocating For Familes Affected By Di George, VCFS, 22q11
Face 22–Families Advocating for Chromosomal Education
Chromosome 22 Central
Little Faces, Big Hearts
VCFS & 22q11 Foundation Inc (Australia)
Genetic Alliance
Elwyn Genetics Services
Arizona Velo-Cardio-Facial-Syndrome Family Support Group
Inclusion Network
Table Of Contents
22q In the News
Genetics
Support and Friendship
Research
Books and Videos
Resources By Region
Mental and Behavioral Health
For Non-Profits
Children's Hospitals
Child Education and Development
Special Education
Camps
The International 22q11.2 Deletion Syndrome Foundation, Inc.
Family Village–Global Community of Disability-Related Services
Family Village–Velo-Cardio-Facial Syndrome
The National Craniofacial Association
American Heart Association–DiGeorge Syndrome
AboutKidsHealth–Search results for 22q11
Center For Craniolfacial Anomalies–Velocardiofacial Syndrome
Genetics Home Reference–22q11.2 Deletion Syndrome
Wikipedia–DiGeorge Syndrome
Answers.com–22q11 Reference Answers
Wrong Diagnosis–22q11.2 Deletion Syndrome
Cincinnati Children's Hospital–Heart-Related Syndromes–VCFS
Kosmix–22q Directory
Cleft Palate Foundation
Southeastern Regional Center of Excellence for 22q
Reflux.org
Nov. 2006–She Hopes To Help Other Parents Understand Genetic Defect
Jan. 2007–CBS News–10 Questions: What is VCFS?
May 2007–Frustration and Devastation Mark Genetic Disorder
Aug. 2008–Aine Lawlor is making the pen her friend
Dec. 2009–Mother Starts Support Group for Children With 22q
Jan. 2, 2010–Mission 22q: A quest to help other parents
March 31, 2010–Working-Memory Gene Linked to Schizophrenia
Back To Top
Scribd–Cytogenetics
Genetics Home Reference–What is genetic testing?
Genetics Home Reference–22q11.2 Deletion Syndrome
Genetics Education Center–University of Kansas Medical Center
23 And Me
National Human Genome Research Institute
CDO–Chromosome Disorder Outreach
The Global Genes Project
Congenital Cardiovascular Genetics
National Coaltion For Health Professional Education In Genetics–22q11.2
Genetic Alliance Newborn Screening Summit–Envisioning a Future for Newborn Screening
Elwyn Genetic Services
Access DNA: Know Your Genetics
International Federation of Human Genetics Society
GENDIA—Genetic Diagnostic Network
Genetic and Rare Diseases Information Center (GARD)
Parent To Parent of Pennsylvania
National Organization for Rare Disorders–Special Needs Advocate for Parents
Family Support Network–Special Services for Special Families
Special Needs Advocates For Understanding
The Federation for Children With Special Needs
The Parental Advocate
22q11.2 Deletion Syndrome
Upper Midwest VCFS/DGS Community
Cafe Mom–22q11 Deletion Awareness Group
Chromosome 22 Central–Support for ALL Chromosome 22 Disorders
The Daily Beast–Blogs and Stories, Quinn Bradlee
Dating4Disabled.com
Yahoo Health Groups–22q11, VCFS
Yahoo Health Group–22q Exchange
Yahoo Health Group–22q11 Deletion Support Group
Yahoo Health Group–22q Young Adult Group
Yahoo Health Group–Adults Living With VCFS
Immune Deficiency Foundation Support Group
Max Appeal
Raising Special Kids
Exceptional Parents Unlimited
Amazon Special Needs Community
The Father's Network–
Supporting Fathers and Families raising children with special needs
Family Caregiver Alliance
Sibling Support Project
Pull-Through Network–Analrectal Education and Support
AdrenalFatigue.org
Southwestern Regional Center of Excellence for 22q
Especially for Parents of Children and Youth with Special Needs Network
Healthy Transitions—Moving from Pediatric to Adult Health Care
Family Voices—Keeping Family at the Center of Children's Health Care
Families Leading Planning, UK
Institute For Community Inclusion
Parent Technical Assistance Center Network
The Social Security and Disability Resource Center
Sibling Leadership Network
National Alliance on Mental Illness (NAMI) Family-to-Family
Disability.gov
Apps for Children with Special Needs
FAST–Family Advocacy and Support Training
Strengthening Families Program
TATRA–Technical Assistance on Transition and the Rehabilitation Act
Events Calendar 2011
Peak Parent Center
Family Caregiver Alliance
NICHCY-National Dissemination Center for Children with Disabilities: You Are Not Alone
Vehicle Purchase/Modification Funding Resources
Family Care NavigatorSM —State-by-State Help for Family Caregivers
Family Caregiving 101
Community Services Locator—
An Online Directory for Finding Community Services for Children and FamiliesFuture Care Planning: A Roadmap for Family Caregivers
Ready, Set, Fly! A Parent's Guide To Teaching Life Skills
22q Calendar of Events Around the World
One Place For Special Needs
Family Voices
Rethink Mental Illness–Sibling Network
Disability.Gov–Connecting disability community to information & opportunities
Terminal 22q Deletion Syndrome: A Newly Recognized Cause of Speech and Language Disability in the Autism Spectrum
Prenatal Screening and Diagnosis for Pediatricians
Dermatoglyphic profile in 22q deletion syndrome
Antibody Deficiency and Autoimmunity in 22q11.2 Deletion Syndrome
Genetic and Rare Diseases Information Center–Chromosome 22q Deletion
Genome.gov–All About The Human Genome Project (HGP)
Wikipedia–Marvin Minsky
UCDavis Mind Institute
Rare Diseases Clinical Research Network
Wadsworth Center–Genetic Diseases of Children Advance Research & Care
Back To Top
The Doctors–Silas' Story, DiGeorge Syndrome (video)
ADD WareHouse–Books and Resources
Autism Resource Center–Interview with Dr. Robert Naseef
Nobody's Perfect–Living and Growing With Children Who Have Special Needs
List of Public Libraries in the United States
articles@coultermedia.com
Creating Change–Innovations in the World of Disability
Wrightslaw: From Emotions To Advocacy, 2nd Edition
22q11.2 DS Educational Videos
The Mind: A Users Guide–Editor Raj Persaud
The Young Mind–Editors Sue Bailey & Mike Shooter
Surviving Schizophrenia: A Manual for Parents, Patients, and Providers
–E. Fuller Torrey
The Complex Child eMagazine
Kid's Stuff and Things
University of Minnesota–Institute on Community Integration Newsletters
Australia
http://www.vcfsfa.org.au/
New Zealand
http://www.vcfs.org.nz
Texas
http://www.vcfstexas.com
Partners Resource Network
Southern California
http://www.specialedhelp.com/index.htm
Arizona
http://www.raisingspecialkids.org
ACCCI–Arizona Consortium for Children with Chronic Illness
VCFS–Arizona Support Group
Pennsylvania
Family Voices of Pennsylvania
Health Data By State
http://statehealthfacts.org/
The Bipolar Child
Childhood and Adolescent Bipolar Foundation
National Institute of Mental Health
MaineGeneral Health–Schizophrenia Linked to Genetic Mutation
HealingWell.com–Schizophrenia Linked to Genetic Mutation
Wikipedia–Asperger Syndrome
O.A.S.I.S.–Online Asperger Syndrome Information and Support
Aperger's Society
Yahoo Health–Autism Symptoms
Autism Speaks
ADD Without Hyperactivity
Depression and Bipolar Support Alliance
Yahoo Health–Schizopohrenia Medications
Schizophrenia.com–Medication Treatment
HelpGuide–ADD and ADHD Treatment
Autism–Exams and Tests
CHADD–Children and Adults With Attention Deficit/Hyperactivity Disorder
National Resource Center on AD/HD
Schizophrenia Awareness Association
Association For Behavioral and Cognitive Therapies & The Society Of Clinical Child and Adolescent Psychology
The Complex Child–Monthly e-Magazine
NIMH–Bipolar Disorder in Children and Teens: A Parent's Guide
Behavior and Learning in Children with 22q11.2 Deletion (PDF)
Totally ADD
Neurodevelopmental and Behavioral Pediatrics—Golisano Children's Hospital
RehabInfo.Net
Children's Hospital of Philadelphia–22q and You Center
Hospital For Sick Children (SickKids) Canada
Omni Medical Search Online–230 Medical Associations and Organizations
Lab Tests Online
Upstate University Hospital, Syracuse, NY–VCFS Center
Lucile Packard Children's Hospital at Stanford–Velo-Cardio-Facial Syndrome
University of Virginia–Ear, Nose, Throat
Summary of the Personality Disorders
National Center for Health Reform Implementation
Rondalyn Whitney, Occupational Therapist Specializing in Kids with LD
Parents Magazine–12 Sign Language Words For Baby
Sign2Me–ASL and Early Education Resources
Squidoo–Free Advice on Baby Sign Language
Your Baby Can Read! Early Language Development System
High School and College Tutorial Subscription Service
Dr. MDK.com–Pediatric Office Without Walls
U.S. Department of Health & Human Services
Kidica–Shopping Directory for Children's Services and Products
ParentsDirect.net
Parent Training and Information Centers
National Institute for Literacy
idanatl.org
National Rehabilitation Information Center
Maternal and Child Health Library at Georgetown University
Homeschooling Your Struggling Learner
Wrightslaw Special Education Law and Advocacy
National Center For Learning Disabilities
Cutler-Landsman Consulting
Federation for Children with Special Needs
The Parental Advocate
US Department of Education–IDEA 2004
LdPride.net
Adult ADD
Embedding Health Outcomes in the IEP Process–Video
The Complete IEP Guide: How to Advocate for Your Special Ed Child
Autism: Asserting Your Child's Rights to a Special Education
Special Needs Advocacy Resource Book:
What You Can Do Now to Advocate for Your Exceptional Child's Education
NOLO's IEP Guide: Learning Disabilities
A Guide to Special Education Advocacy
Negotiating The Special Education Maze: A Guide for Parents and Teachers
Exceptional Parent–Trusted Resource for Special Needs Community
Educational Issues for Children with Chromosome 22q11.2 Deletion
by Cheryl Dulz (PDF)
Child Care Centers and the Americans With Disabilities Act
Transition Resources
COPAA—Council of Parent Attorneys and Advocates, Special Education Rights
Cognitive Solutions Learning Center, Inc
Fifth Freedom.org
PARCC–Partnership for Assessment of Readiness for College and CareersOne Place for Special Needs—Resource Site
Communication Access for People who have Speech and/or Language Disabilities—A Resource for Businesses and Organizations
Understanding the Americans with Disabilities Act Amendments Act and Section 504
AHEAD—Association on Higher Education and Disability
Why we're here
Founder and Author of “Missing Genetic Pieces–Strategies For Living With VCFS”
