Individuals with Cri du Chat Syndrome are Super Heroes and strive to be the best they can be despite their limitations
Lakewood, California (PRWEB) April 30, 2016
During the first full week of May, the 5p- Society of North America, along with support organizations from over 60 countries are bringing awareness of Cri du Chat Syndrome.
One of the goals of the 5p- Society is to create a Caregivers Guide for parents and caregivers with current information on diagnosis, therapies, educational goals, transition and adult living.
“Social Media has created a whole new platform bringing together families who have felt alone in their journey.” Laura Castillo, Executive Director, 5p- Society. “Families are immediately able to connect, network, vent and share information, something I wasn’t able to do 28 years ago when my daughter was born.”
“Individuals with Cri du Chat Syndrome are Super Heroes and strive to be the best that they can be despite their limitations” Jennifer Wong, President, 5p- Society. “Awareness of self is also an important aspect of having a child with a disability. If someone is able to have a basic understanding of their self, and diagnosis, then they are able to understand that their struggles or inability to do something is not a shortcoming of them, but a result of their diagnosis. Therefore creating greater confidence in one self.”
In an ongoing effort to raise awareness, members and supporters are encouraged to participate in events throughout the week.
- Stripy Sock Campaign: Wear striped socks, one long, one short, representing the whole and deleted fifth chromosomes, especially on May 5th. #stripysocks
- Virtual 5k for 5p-, to raise awareness and money for programs that benefit the Cri du Chat Syndrome community. A Virtual Walk can be anything you want it to be, a walk, a run, a picnic, or any type of event!! Over 20 “Teams” have been created all over the world. #5pminus5k
- Where in the World is C5? In an effort to encourage world-side participation, we are asking families to pose for a picture with C5, the mascot of International Cri du Chat Awareness Week (named C5 for Chromosome 5) and share their picture on social media using the #SeeC5 and #criduchatawareness. Looking forward to seeing pictures from around the world and maybe even with a celebrity or two!!
- State Proclamations: Many states have proclaimed May 5 as Cri du Chat Syndrome Day, including: North Carolina, Massachusetts, Missouri, Michigan, Illinois, Wisconsin, Oklahoma, Florida, Tennessee, Louisiana, & Washington.
Some of the many events scheduled for the week:
May 1 -Northern California – Danville – (9 AM) Mya’s 5k for 5p-
May 1 – Southern California – Lakewood – (2 PM) Katie Castillo’s Cheetahs 5k Walk
May 1 – Maryland – Brandywine - 5k Walk - Walking to Bring Awareness to Cri du Chat Syndrome
May 1 – Wisconsin – Algoma (1 PM) 5p- Awareness Walk
May 1 – New York – Harrison (10 AM) - #SaraRocks Walk
May 7 – Ohio – Beavercreek - Walk with Team Taylor Towers
For more information about additional information visit http://www.fivepminus.org/Awareness
About Cri du Chat Syndrome: Discovered in 1963, Cri du Chat Syndrome (CdCS), is a rare genetic disorder that is caused by a permanent deletion of a portion of the “P” arm of the 5th Chromosome (5p-). Each year in the United States, approximately 50-60 children are born with 5p- Syndrome. 5p- Syndrome is characterized at birth by a high pitched, “cat-like cry” caused by an underdeveloped larynx and weak breath support. Other characteristics include low birth weight, poor muscle tone, microcephaly and potential medical complications. The severity of the disorder varies among individuals and can be considered a spectrum disorder. Symptoms go from mild and unnoticed which causes a delay in diagnosis to severe where the individual requires to be cared for 24/7 and will require ongoing support from a team of parents, therapists, medical professionals, educational professionals and extended family members to help the individual achieve his or her maximum potential
About the 5p- Society: The 5p- Society was founded in 1986. It is a non-profit organization that works to empower families with knowledge about the syndrome, facilitate connections, support research, advocate for improved prognosis and to enrich the lives of individuals affected by Cri du Chat Syndrome and their families. The 5p- Society is dedicated to raising awareness about Cri du Chat Syndrome through education, support for CdCS families, and supporting research.