Social Support Groups

Many families have found valuable information and support through the internet. The resources listed below provide the opportunity to leave a message or a question concerning a problem that a parent may have with their child and get a response from other experienced parents.

5P- Society Facebook Fan Page

Cri du Chat / 5P- Society Facebook Closed Group Page
Members are screened to provide privacy.
To join, please send a request via Facebook.

CdCS Angel Forever Family: 5p- Bereavement Support Group
This a closed group. To join, please send a request via Facebook.

Yahoo Support Group

Charitable Groups and Government Services

The ABLE ACT

The law allows eligible individuals with disabilities the ability to establish “ABLE Accounts” for qualified beneficiaries that resemble the qualified tuition programs, often called “529 accounts”. The new ABLE accounts will allow more individual choice and control over spending on qualified disability expenses and limited investment decisions, while protecting eligibility for Medicaid, Supplemental Security Income, and other important federal benefits for people with disabilities.

For More Information:
Information Sheet created by the ARC
Slideshow Handout by USC University Center of Excellence in Developmental Disabilities at Children’s Hospital Los Angeles

CRIDUCHAT.ORG

Criduchat.org is tool for parents, families, teachers and health professionals to learn more about Cri du Chat Syndrome (5P- Syndrome).
http://www.criduchat.org/

SOCIAL SECURITY ADMINISTRATION

SSI Compassionate Allowance Conditions – DI 23022.375 Cri du Chat Syndrome
https://www.ssa.gov/

KIDS WAIVER

“Your source for children’s Medicaid waiver programs”
Check your state to see if they have the “Katie Beckett” Waiver
www.kidswaivers.org

DISABILITY.GOV

US Federal government website for information on disability programs and services nationwide
www.disability.gov

NATIONAL COUNCIL ON DISABILITY

Empowers individuals with disabilities and promote equal opportunity.
http://www.ncd.gov/

NATIONAL DISABILITY RIGHTS NETWORK

The National Disability Rights Network (NDRN) works to improve the lives of people with disabilities by guarding against abuse; advocating for basic rights; and ensuring accountability in health care, education, employment, housing, transportation, and within the juvenile and criminal justice systems
http://www.ndrn.org/index.php

NATIONAL COORDINATING CENTER FOR THE GENETIC SERVICE COLLABORATIVES (NCC).

NCC focuses on bringing quality genetic and newborn screening services to local communities, and building bridges between public health, primary care/ Medical Home, geneticists and other specialists, and families and consumers.
http://www.nccrcg.org/

CENTER FOR PARENT INFORMATION AND RESOURCES

The Center for Parent Information and Resources (CPIR) serves as a central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs), so that they can focus their efforts on serving families of children with disabilities.
http://www.parentcenterhub.org

A list of available resources in the United States for people with disabilities sorted by state.
U.S. State Resource List (pdf)

A list of available resources in the Canada for people with disabilities sorted by province.
Canada Province Resource List (pdf)

The ARC

The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. They encompass all ages and all spectrums from autism, Down syndrome, Fragile X and various other developmental disabilities.
http://www.thearc.org/

GENETIC ALLIANCE

The Genetic Alliance is a non-profit organization dedicated to helping individuals and families who have genetic disorders. Our toll-free helpline is a resource for consumers and professionals who are looking for genetic support groups and genetic services.
http://www.geneticalliance.org/

NORD

NORD is the only organization of its kind–a unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities.
https://rarediseases.org/

CHROMOSOME DELETION OUTREACH, INC.

CDO is a non-profit organization providing support & information to families affected by rare chromosome disorders. Information contained in any electronic mailing should be used for informational & supplemental purposes only. Please visit our website for detailed privacy policy and disclaimers. Please always contact your personal healthcare provider if you have questions or concerns. Our medical advisors and parent volunteers cannot be aware of the intricacies and uniqueness of your personal situation.
http://chromodisorder.org/

KIDS WISH NETWORK

We are dedicated to infusing hope, creating happy memories, and improving the quality of life for children who are experiencing life-altering situations.
http://kidswishnetwork.org/

FEEDING TUBE AWARENESS FOUNDATION

The Feeding Tube Awareness Foundation is dedicated to providing parents and caregivers with the information needed for day-to-day life with a child who is tube-fed. Moreover, we strive to raise awareness so that children who are tube-fed enjoy increased acceptance in society and parents have greater support in their care.
http://www.feedingtubeawareness.org/

SIGNING TIME

Bring the magic and fun of American Sign Language to the children in your life.
http://www.signingtime.com/

VIEWPOINT MOBILITY, LLC

Maker of North America’s best wheelchair accessible minivan, “The Vision”, a rear-entry, lowered floor modification that is seamlessly engineered to make Daimler-Chrysler, Ford, and General Motors minivans as barrier-free as possible.
http://www.wheelchairvans.ca

1815 Palmer St.
Kalamazoo, MI 49001 USA
Tel: 877-368-6022 Fax: 269-344-5649
info@viewpointmobility.com

3190 Ridgeway Drive, Unit 17
Mississauga, ON, L5L5 S8 CANADA
Tel: 905-828-1996 Tel: 800-561-9600

WRIGHTSLAW

Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.
http://wrightslaw.com/

NATIONAL SUICIDE PREVENTION HOTLINE

This is a 24-hour; toll free, suicide prevention service available to anyone in suicidal crisis. 1-800-273-TALK
https://suicidepreventionlifeline.org/

Guide to Disability Benefits from Disability.gov

Medicare & Social Security: Benefits for Disabled Individuals

Extra Help with Medicare Prescription Drug Plan Costs

Disability.gov’s guide to Transportation

Buying a Home | Department of Housing and Urban Development

Guide to Moving for the Disabled

Home Modifications to Promote Independent Living

Emergency Preparedness for People with Disabilities and other Special Needs.

Fire Safety & Disabilities Guide

Home Accommodation Cost Guide for the Disabled

Tips for Travelers with Disabilities by Cheapflights.com.

Diapers for People with Disabilities when they have outgrown commercial brands:
http://www.tranquilityproducts.com/slimline-original-disposable-brief
http://www.mypoolpal.com/special-needs.cfm
https://tenaclub.com/product-category/tena-briefs/
http://www.emedicalnow.com/prevail-sleep-overs-youth-pullup-diapers.html
https://www.amazon.com/Prevail-SLP05301-Sleepover-Diaper-Youth/dp/B009YPL8T4

Publications

“Cri-Du-Chat Syndrome Guide lines For Parents and Professionals”
By: Dr. Kim Cornish, Dr. David Bramble and Margaret Collins

Cri Du Chat Syndrome Support Group
A 22 page booklet describing Cri du Chat Syndrome. The booklet describes the syndrome, features, motor & sleeping difficulties, hearing & vision, language & communication, attention and hyperactivity, social skills, daily living skills, school related difficulties, respite care, and behavior difficulties. Contact the Cri Du Chat Syndrome Support Group in the United Kingdom for ordering information.

http://criduchat.org.uk/

“Cry of the Cat” Video
Helen McGrath

“Cry of the Cat” was produced, written, and directed by Helen McGrath (a parent of a child with the syndrome). It addresses the lack of literature available to new parents and guides them in understanding how their child may develop as they grow. Using a positive approach, the video aims to show the range of the syndrome from mild through moderate to severe developmental delay. Filmed over four years, it follows the life of four Sydney Cri du Chat children, with brief appearances of eleven other children from around Australia. It looks at the prognosis, the impact of the prognosis, early intervention, schooling, therapy, speech, family and support networks, and the future. There are interviews with geneticists, educators, and therapists. The video is for parents, families and friends, doctors, teachers, therapists, and anyone who deals with a child that has Cri du Chat Syndrome.

To order please call (888) 970-0777 or send an email to director@fivepminus.org.

“The 5p- Society” Video

“The 5p- Society” Video is an 11 minute video that promotes and describes the role of the Society and a brief description of the syndrome. The video interviews two families — the family of a young adult with the syndrome and a family of a newly diagnosed child with the syndrome. The video also interviews genetic researcher Dr. Joan Overhauser and 5p- Society founder Kent Nicholls.

To order please call (888) 970-0777 or send an email to director@fivepminus.org.

Cri du Chat Booklet
Virginia Commonwealth University

Department of Human and Molecular Genetics
(804) 828-9632

A 37 page booklet describing 5p- Syndrome, including basic genetics and outlook in layman’s terms and summarizing the result of a study of home-reared children. The book is the most comprehensive, up-to-date information on 5p- Syndrome available today. Order directly from the Medical College of Virginia. Cost is $10.00 ($15.00 outside the US).

Genetics and Mental Retardation Syndromes: A New Look at Behavior and Interventions
Published by Brookes Publishing, a publisher of early intervention and education resources.
By: Elisabeth M. Dykens, Ph.D., Robert M. Hodapp, Ph.D. & Brenda M. Finucane, M.S.

https://www.amazon.com/Genetics-Mental-Retardation-Syndromes-Interventions/dp/1557664714