International Cri du Chat Awareness Week
A message from the 5P- Society of North America:
The 5p- Society of North America, along with support organizations from Argentina, Australia, Belgium, China, Columbia, Greece, Italy, Japan, Poland, Netherlands, Tobago, Trinidad, Turkey, and the United Kingdom, are proud to announce that May 13 – 19, 2012 will be designated as Cri Du Chat Syndrome Awareness Week.
As most of you know, Cri Du Chat syndrome affects every country, race, gender, religion, political affiliation, and social class. Most people may not have heard about Cri Du Chat syndrome, but we are here, and our goal is to be known.
So, the week of May 13-19, we will stand together, hand in hand with friends and family, children and adults, old and young, rich and poor, from around the world, to say that we are here and we need your help to spread the word that Cri Du Chat syndrome exists.
Our goal is to end the outdated misinformation given to our families. Even living in the digital age, most people are unaware what Cri Du Chat syndrome is and what our society stands for.
Every year, there are children that are born with Cri Du Chat syndrome and due to the rarity of the syndrome and the lack of information, these children slip through the cracks and are not diagnosed, or are misdiagnosed. Every year, there are families that are presented with information, about their child's syndrome, from the 1970's. Stating that their child will not walk, talk, and may die at an early age. This information is not true, and something needs to be done about it. We are here to remedy these issues. Our hope is that we are able to raise awareness of Cri Du Chat syndrome and to get the most up to date information into the hands of medical professionals around the world. We don't want another family to slip through the cracks and for another family to live in fear that their child may die at an early age.
To aid us in raising awareness of Cri Du Chat syndrome we are currently in the process of finishing up an awareness week website. The website will be located at: http://www.criduchat.org/.
The website is going to be a place where we will be posting events from around the globe, as well as information about Cri Du Chat syndrome. We are encouraging everyone to plan an event, during this week, to help spread awareness. If you plan an event please let us know and we will be happy to add it to the website. We also want photos and video of your event, to post on the site.
We have also created a store where you can purchase Cri Du Chat syndrome merchandise. The store will host shirts and hats, as well as iPod/Phone cases, coffee mugs, and a whole lot more. The items can be found at: http://www.cafepress.com/5PShop. We will be adding items to the store periodically; so if you don’t see anything you would like to purchase right now, something may come available at a later date, so keep checking back.
So, once again, we ask that you join us in this unprecedented event, as we stand together, hand in hand with friends and family, children and adults, old and young, rich and poor, from around the world, to say that we are here and that Cri Du Chat syndrome exists.
The 5p- Society
A Family Day is being planned in Queensland to coincide with this week. It is hoped that other events may take place around the country. Please share any ideas you have for raising awareness.