International Cri du Chat Syndrome World
"It is amazing what talking to another person, who understand what you are going through, can do for your mental health." Nick Wallace, President
LAKEWOOD, Calif. (PRWEB) May 01, 2018
May 5, 2018, Cri du Chat Syndrome Awareness Day, kicks off International Cri du Chat Syndrome Week, May 5 -12.
The 5p- Society of North America, along with support organizations from over 70 countries, are bringing awareness of Cri du Chat Syndrome (CdCS), also known as 5p- Syndrome, a permanent deletion on the “p” arm of the 5th chromosome. 2018 marks the 55th year since the identification of Cri du Chat Syndrome by Dr. Jerome Lejeune. Join us in celebrating the Champions of 5p- Syndrome, by raising awareness around the world.
The 5p- Society’s mission is to maximize the quality of life of an individuals with 5p- and their families. One way to improve the lives of individuals with the syndrome is by creating a Caregivers Guide with current information on diagnosis, therapies, educational goals, transition and adult living. The Guide is in its final stages. Over 100 families participated in collecting the data and information needed to complete the guide. The 5p- Society is also committed to connecting parents to network, vent and share information through their Social Media platforms.
“Families who have felt alone in their journey of raising a child with Cri du Chat Syndrome can now find immediate resources, support and information.” Laura Castillo, Executive Director, 5p- Society. “This was not available to me 30 years ago when my daughter Katie was born.” “Learning about the strengths and weaknesses of individuals with CdCS has become extremely educational and has created new and unique conversations.” “We’d love to see more research done on the various genes affected on the 5th chromosome and the correlation with the characteristics of the syndrome.”
“It is not easy being a parent of a special needs child and at times it can push you to your breaking point,” said Nick Wallace, President of the 5p- Society. Nick challenges families during this time of year to take time to connect with another person/family that has an individual with CdCS. Make a resolution to call, email, text, or message another person/family. ”It is amazing what talking to another person, who understands what you are going through, can do for your mental health.”
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 50 “Teams” have been created all over the world. #5pminus5k. With one team in North Carolina, Graham’s Gang having over 150 participants.
-5 Random Acts of Kindness for 5 People Campaign: Families are encouraged to do 5 random acts of kindness for 5 different people in honor of someone living with Cri Du Chat Syndrome. Hand out a brief information card about Cri Du Chat to those who receive the act of kindness in the community.
- Where in the World is C5? In an effort to encourage worldwide 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 have been applied for and received from several state Governors around the USA.
- Meet up with other families for a day at the park, or attend a 5p- Society sponsored Regional Get-Together.
- Join us for a 5k Walk on May 5 – Southern California – Lakewood – (11:00 AM) Katie Castillo’s Cheetahs 5k Walk.
For more information contact Laura at 888-970-0777.
For more event ideas, please visit https: https://fivepminus.org/event/awareness-week-events/?event_date=2018-05-05
About Cri du Chat Syndrome: Identified in 1963 by Jerome Lejeune, a French physician, 2018 marks the 55th year since its discovery. Each year in the United States, approximately 50-60 children are born with 5p- Syndrome. It 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.
Visit us on the web at http://www.fivepminus.org, @5pminus, #stripysocks #criduchatawareness, #5pminus5k #CDCS #5pminus #SeeC5
