Cardiovascular Genetics - 22q11 Deletion Syndrome

22q11 Deletion Syndrome¹

New! Northeast VCFS Support Group Meeting - November 4, 2006 at Children's Hospital Boston

Note: The information contained on these pages is currently being revised. Please check back often for updates

Announcing 22q11 Deletion Syndrome Parent Support Group at Children's Hospital Boston
Go here for more information.

About this section:

Portions of the 22q11 Deletion Syndrome segment were originally compiled as part of Masters Degree Project collaborations between the:

- Genetic Counseling Program at Brandeis University and

Children’s Hospital Cardiovascular Genetics program.

Original participants included:

¹Brandeis University:                               Children’s Hospital Boston:
    Ana Morales, MS                                       Dita Obler, MS
    Barbara Lerner, MS                                    Leslie Smoot, MD
    Kathryn Spitzer, MS

²Brandeis University:                                Children’s Hospital Boston:
             Laura Ritinski, MS                                      Dita Obler, MS
             Judith Tsipis, PhD                                       Leslie Smoot, MD

Last Update06-14-06

General

Infancy

Childhood

Adolescence

Adulthood

Education

Hands on Planning

Resources

General

Introduction
Nomenclature
Genetics
Findings

What Can I do?
(Becoming an expert and an advocate for my family)

Form Partnerships
Selecting your team
Get informed
Get involved

Resources
	Resources - National Organizations and Web Resources - Support Groups - Cardiac Information - Educational Information - Immune Deficiency Information - Nutrition Information - Speech and Language Resources

Hands on Planning
	Hand on planning tools and resources - Transitioning to adulthood - Health Tools - Insurance Tools - Educational Tools National Resources

Education

Guides:

An Educators Guide to Understanding VCFS²
Helping your child with executive function deficits
(Project 22q Rockefeller University)
     --Introduction
     --Cognitive Flexibility
     --Cognitive Inhibition
     --Planning/Organizing
     --Problem Solving
     --Working Memory
From the VCFS Educational Foundation:
     --Educating the Child with VCFS
     --Working With Schools to Help Your Child With VCFS
     --Teaching Children to Talk with Their Mouths
Faces of Sunshine: A handbook for Parents/Professionals

www.chop.edu)

Project 22q (Rockefeller University)

Questions and Answers:

What is Velocardiofacial Syndrome (NIH)
From the VCFS Educational Foundation:
--11 Frequently Asked Questions about VCFS
--The Name Game

Meetings:

Infancy

Medical Concerns
Who may be in a medical team?
Developmental Issues
Social Issues
    - Common concerns
    - Family
    - Talking with you child
    - Networking
    - Financial strategies


	Childhood Medical Concerns Who may be in a medical team? Developmental Issues - Early childhood and preschool - School age Social Issues - Common concerns - Making friends - A helping hand - Family - Talking with you child - Networking - Financial strategies


	Adolescence Medical Concerns Who may be in a medical team? Developmental Issues - Some challenges - A helping hand Social Issues - Towards independence - Networking - What can help - Common issues - Mental health - Sexuality - Keep talking


	Adulthood Medical Concerns Who may be in a medical team? Developmental Issues (in progress) Social Issues (in progress)

22q11 Deletion Syndrome1

22q11 Deletion Syndrome¹