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Resources

Adolescent girl with CHARGE syndrome making a craft


Individual with CHARGE syndrome and another person

Please click each section if you would like to learn more.

Foundation Resources

For more information regarding any of the resources listed on this page, please contact info@chargesyndrome.org

New Parent Folder:

A packet of information in a folder designed to help parents of a new baby (or newly diagnosed child) understand what CHARGE syndrome is, frequently asked questions, what to do now, information about the CHARGE Syndrome Foundation, and listing of some helpful resources. 10 pp.
Cost: New parents call 800-442-7604 for a folder at no charge.
$3.00 each; 4 for $10.00; 25 for $50 or you may download it here for free.

CHARGE Syndrome: A Management Manual for Parents
(c2002--Edited by Meg Hefner, M.S. & Sandra Davenport, M.D.):

The manual is an "interactive" publication. Version 2.1 consists of over 200 pages, printed and punched to fit a 3-ring binder (you supply the binder and dividers for the sections). There are sections directed to the professionals and others to the parents. Includes a Medical Visit Pad. (Available in Spanish.)

What do you get in the manual?

  • History of the CHARGE Syndrome Foundation
  • Stories from 10 families, newborn to adult
  • Medical information (over 100 pages, originally version 1.0)
    • Revised diagnostic criteria
    • Prenatal ultrasound information
    • Sections for your doctors (to photocopy and take to them)
    • Sections for parents (so you understand what's going on)
  • Developmental and Educational information (100 new pages in version 2.0)
  • Glossary (17 pages of defined medical terms)
  • Resources
    • Deafblind
    • Educational
    • Medical
  • Medical visit pad, to help organize your medical records
  • Minnesota Developmental Timeline to chart your child's progress

View & Print the Manual Online (free)
OR
Order a Printed Copy of the Manual (PDF Format Order Form)
($25.00 including shipping)
View & Print the Spanish Manual Online (free)
OR
Order a Printed Copy of the SpanishManual (PDF Format Order Form)
($25.00 including shipping)

CHARGE Syndrome Professional Packet:

In response to the most common requests for information from educators and therapists, this packet was developed as a supplement to the Management Manual for Parents. The packet may be downloaded in sections or in full.

View and download Professional Packet

CHARGE Accounts:

A quarterly newsletter published by the CHARGE Syndrome Foundation primarily for parents of children with CHARGE syndrome. Information should also be helpful to medical and educational professionals dealing with these children. Included with membership in Foundation.

Newsletter
View the CHARGE Accounts Newsletter Requests for Submission Guidelines View CHARGE Accounts Archives

CHARGE Syndrome Webinars:

CHARGE Syndrome Awareness Theme Months:

CHARGE Conference Information:

The Foundation has hosted a biennial International CHARGE Syndrome conference each year since 1993.
Information about past conferences is available here.

CHARGE Syndrome Research Information:

The Foundation is committed to research into the causes, identification and treatment of CHARGE syndrome. Our Scientific Advisory Board and Research Committee help guide the Board of Directors in all areas of CHARGE related research. Please visit the Research page to read about their work or to learn more about the procedure for submitting a proposal. Current and past research listings are also available on the research page.

ASL Sign for CHARGE Syndrome:

Both hands are at the shoulders in the letter "C."  Hands move out and away forcefully, closing into the letter "S." ASL Sign for CHARGE Syndrome

Click here to learn about the story behind the sign.

CHARGE Syndrome Medical Bibliography (Revised December 2005):

A listing of medical articles on CHARGE syndrome. These articles were intended for geneticists and other medical specialists. The mailing will be references only, not the articles themselves. Your librarian can help you find these references, and sometimes authors have copies which can be mailed out.
Cost: $4.00

CHARGE Syndrome Brochure:

Cost: Single copies are free; quantity prices are $ .10 each.

Download the brochure (PDF)

Emergency Room Flashdrives:

These flash drives contain templates for entering your son or daughter’s medical information so that you can quickly provide it to medical professionals in the event of emergency.  To order and purchase a CHARGE Syndrome Foundation flashdrive for $10, email info@chargesyndrome.org

Alternatively, you can download the template files for free, customize them and place them on your own flashdrive. Click on the following links for the templates:

**Note - to download the file after you are taken to the Google Docs site, click the arrow facing down in the upper left corner. 

CHARGE Syndrome Questionnaire:

A 7-page questionnaire at no charge covering pregnancy, development, and family life as well as a list of features your child has which are common to CHARGE syndrome.

Parent to Parent:

If you are interested in finding someone in your area please contact the foundation at 800-442-7604 or by sending an email to info@chargesyndrome.org for a list of families.

CHARGE Syndrome Foundation Video:

CHARGE Syndrome Foundation Awards:

Awards are given to individuals, groups, couples or families at each biennial conference.  For more information about the types of awards, procedures for nominating someone or how the recipients are chosen, you may read the document linked below.

CHARGE Syndrome Foundation Awards

Other Online CHARGE Syndrome Resources

The links listed below are to help you in your search for more information regarding CHARGE syndrome. Please note that we do not control any of the information you may find on these sites.

If you know of a website that should be listed below, please send an email to Neal Stanger.

CHARGE Syndrome Book:

CHARGE Syndrome Book

Published in 2010, and edited by Timothy Hartshorne, Ph.D, Margaret Hefner, MS, Sandra Davenport, MD, CM, and James Thelin, Ph.D, this book describes the sensory, physical, and behavioral findings in CHARGE, indicates what kinds of studies need to be done to confirm the findings, and describes how these findings affect the function and development of the individual with CHARGE.  All royalties from this book benefit the CHARGE Syndrome Foundation.  To order a copy, please visit http://www.pluralpublishing.com/publication_cs2.htm

CHARGE Lab at Central Michigan University:

The CHARGE Lab at Central Michigan University undertakes a variety of research projects relating to CHARGE and behavior.

CHARGE Non-Vocal Pain Assessment:

The CNVPA was created from parental input based on behaviors observed of children with CHARGE when they are experiencing pain and from the following references (used with permission from the authors of the NCCPC-R and the PPP):

Breau, L., McGrath, P.J., Finley, A., & Camfield, C. (2004). Non-communicating children’s pain checklist-revised
(NCCPC-R). Halifax, Nova Scotia: Lynn Breau.
Hunt, A. (2003). Paediatric Pain Profile. Oxford, UK: RCN Institute.

CHARGE Non-Vocal Pain Assessment

ASHA CHARGE Syndrome Web Program:

The American Speech-Language-Hearing Association (ASHA) has developed a CHARGE Syndrome Web Program. This program is accessible through the CHARGE Syndrome Foundation web site.

More information about the ASHA CHARGE Syndrome Web Program

American Journal of Medical Genetics Articles:

This issue of the American Journal of Medical Genetics came from the Behavior Strand at the 6th International CHARGE conference. Those papers on behavior are published here along with a few others, and some additional articles on CHARGE syndrome.

View American Journal of Medical Genetics Articles

CHARGE Syndrome Articles and Bibliography at NCDB:

The National Consortium on Deaf-blindness maintains a CHARGE Syndrome section with a variety of articles and both medical and general bibliographies.

Visit the NCDB CHARGE Topic Section

Family Support Groups:

CHARGE Syndrome Listserv - An online support list for individuals with CHARGE, parents, family members, caregivers, doctors, therapists, or anyone with an interest in or is working with a person who has CHARGE Syndrome. Click to join the CHARGE Syndrome Listserv

CHARGE Syndrome Foundation Facebook Page

The CHARGE Family Support Group UK - this is a UK family support group that has been in existence since 1987.

Texas CHARGE Group - this is a group of Texas families, friends, and professionals who are dedicated to helping children and young adults who live with Charge syndrome.

CHARGE Syndrome Association of Australasia Ltd - The CHARGE Syndrome Association of Australasia is a not-for-profit organisation committed to improving the health and welfare of children and adults with CHARGE Syndrome. The Association supports families in Australia and New Zealand to enable children and adults with CHARGE Syndrome to reach their full potential.

Association CHARGE - this is a French support group, formed in 1996 by parents.

Dutch CHARGE Syndrome Network - this site is the source of information about CHARGE based in the Netherlands. It is a site by and for parents of children with the syndrome, for schools, professionals and other interested parties.

Belgian CHARGE Syndrome Website - information by and for parents of children with CHARGE syndrome.

CHARGE Syndrome Canada - this is the site of a Canadian family support group.

CHARGE Syndrome German - this is a non-profit self-help group in support of individuals with CHARGE and their families in German speaking countries (Germany, Austria, Switzerland, etc.).

Asociación Españoña Síndrome de Charge - Family support group based in Spain

NFADB (National Family Association for Deaf Blind) - this organization supports individuals who are deafblind and their families.


Other Assorted Websites:

National Joint Committee for the Communication Needs of Persons with Severe Disabilities - The purpose of the NJC is to promote research, demonstration, and educational efforts, including both inservice and preservice, directed to helping persons with severe disabilities communicate effectively.

National Consortium on Deaf-Blindness - NCDB works collaboratively with families, federal, state and local agencies to provide technical assistance, information and personnel training.

Perkins School for the Blind - located in Watertown, Massachusetts, the school provides services to students from birth to 22 years of age who have visual impairments or those who are deafblind.

Exceptional Parent Magazine - Magazine designed for families who have a child with a disability.

Seeing, Hearing and Smelling the World - this is a report on new findings that help scientists make sense of our senses.

Congenital Heart Defects - Information and resources about congenital heart defects.

Deaf Blind resources from the UK - web resources listing about deafblindness.

Feeding Tube Awareness - Group of parents who have children with feeding tubes providing support and information to one another.

Financial Aid Information for Individuals with Disabilities - Listing of scholarships and eligibility requirements for individuals with disabilities in the US and Canada.

The Low Vision Gateway - resources for vision loss, vision-impairment, blindness, low vision aids and low vision rehabilitation services.

The Lighthouse, Inc. - non-profit organization dedicated to preserving vision and to providing critically needed vision and rehabilitation services to help people of all ages overcome the challenges of vision loss.

Texas School for Blind and Visually Impaired - a special public school in the continuum of statewide placements for students who have a visual impairment. It is also a statewide resource to parents of these children and professionals who serve them. Students, ages 6 through 21, who are blind, deafblind, or visually impaired, including those with additional disabilities, are eligible for consideration for services at TSBVI.

Sense - this group is based in the UK and is the leading national charity that supports and campaigns for children and adults who are deafblind.

Minnesota DeafBlind Technical Assistance Project - article on CHARGE Syndrome.

Wonderbaby.org - a project funded by Perkins that is dedicated to helping parents of young children with vision impairments as well as children with multiple disabilities.

May We Help - this is an organization based out of Cincinnati, Ohio that engineers and builds devices for people with disabilities to enhance their lives at no cost to them.

Education Acronyms: this is a list of commonly used education-related acronyms and their explanations.