'One of the goals of the 5p- Society is to end the outdated misinformation given to families when their child is diagnosed.
Lakewood, CA (PRWEB) April 29, 2014
May 4-10, 2014 is Cri Du Chat Syndrome Awareness Week
May 5 is officially designated as Cri Du Chat Day in the United States.
The 5p- Society of North America, along with support organizations from Argentina, Australia, Austria, Belize, Belgium, Bosnia & Herzegovina, Brazil, Canada, Chile, China, Colombia, Denmark, Ecuador, Finland, France, Germany, Greece, Hungary, Iceland, India, Ireland, Israel, Italy, Japan, Lebanon, Malta, Mexico, Netherlands, New Zealand, Northern Ireland, Panama, Peru, the Philippines, Poland, Qatar, Russian, Scotland, Singapore, Slovakia, South Korea, Spain, Sweden, Switzerland, Thailand, Trinidad & Tobago, Turkey, the United Kingdom and Venezuela are proud to announce that May 4-10, 2014 will be designated as Cri Du Chat Syndrome Awareness Week.
To bring further attention to and to raise awareness of 5p-, the Disabled World has designated May 5 as Cri du Chat Syndrome Day. "Individuals with Cri du Chat Syndrome (CdCS) deserve to be recognized for what they CAN do versus what they cannot do. It is the hope of the 5p- Society to raise awareness of this syndrome by spreading this message to the world,” said Nick Wallace, 5p- Society Vice President and Chairperson of the Awareness Week.
Each year in the United States alone, approximately 50 to 60 children are born with 5p- Syndrome (five p minus). “5p-” is a term used by geneticists to describe the loss of genetic material on the short arm of the fifth chromosome. It is also known as Cat Cry Syndrome or Cri du Chat Syndrome.
Some common characteristics of the syndrome at birth are a high pitched cry, low birth weight, poor muscle tone, microcephaly, and other potential medical complications. "5p-" is a term used by geneticists to describe a portion of chromosome number five that is missing in these individuals.
“One of the goals of the 5p- Society is to end the outdated misinformation given to families when their child is diagnosed,” said Laura Castillo, Director of the 5p- Society. “Even living in the digital
age, most people are unaware of this syndrome and what our organization stands for.”
Children born with this rare genetic deletion will most likely require ongoing support from a team of parents, therapists, medical, and educational professionals to help the child achieve his or her maximum potential. 5p- Society and parents from around the world have submitted videos of their children to support the knowledge that these kids CAN do amazing things. Watch the video at https://www.youtube.com/watch?v=2AEvN0-6M6I.
Nick Wallace added, "One of our parents, Evelyn Sifuentes, came up with the 'stripy socks' idea. On May 5th members and supporters are encouraged to wear striped socks, one long, one short, representing the whole and deleted fifth chromosomes."
Some of the activities planned that week to increase awareness of the syndrome are:
- May 4 – 12-3 p.m. – Director of the 5p- Society, Laura Castillo, and her daughter Katie will have a table at the Ralph’s Supermarket in Lakewood passing out information and talking to
people about the syndrome.
- May 4 – 7 a.m. – noon – Sharon Beckman, Society Ambassador will have a table at the 9 News Health Fair at the Colorado Convention Center in Denver.
- May 8 – noon – Nick Wallace, 5p- Society Vice President and Chairperson of the Awareness Week, will be speaking at a meeting of the Kiwanis Club of Bellefontaine, Ohio.
- May 10 – Ashley Rouillard is hosting fun filled event at the Royal Canadian Legion #613 in Ontario Canada.
- Nancy Martinez, member, is working with Military Bases and their Exceptional Family Member Program. Some chapters will be including information in their newsletters.
For more information about additional events and Awareness Week, visit us at http://www.criduchat.org.
About the 5p- Society:
The 5p- Society was founded in 1986 by parents of children with 5p- Syndrome, with the intent of spreading information about the syndrome to other families, and providing the opportunity to meet and share common experiences. The organization relies heavily on the monetary donations and volunteerism of its members to exist. Current membership is over 800 families.
Visit us on the web at http://www.fivepminus.org