We exist!

Cri du Chat Syndrome has become my passion. It consumes me at times with good and sometimes overwhelming emotions but I would not change my daughter. Cri du Chat Syndrome is not just a part of her it is also a part of me and my family. After the initial shock set in after her diagnosis I did my research and became quite obsessed with the syndrome as well as genetic disorders in general. The truth is there are so many out there the magnitude is quite overwhelming.. But there are not enough voices. At least not for the rare disorders or syndromes. So I have wanted to contribute and become involved in any way I can. I joined the 5p- Society, created Sophie’s website and started blogging to reach out to comfort other parents. I attended my first 5p- conference which was amazing! I have met so many wonderful people along the way.

Imagine how excited I was to learn that the 5p- Society of North America in conjunction with support organizations from other countries just announced the launch of “Cri du Chat Awareness Week” from May 13-19 beginning in 2012! The new awareness website is www.criduchat.org

What an amazing opportunity to raise awareness for our loved ones. To let the world know we exist! This is a triumph not just for Cri du Chat Syndrome but for all those rare disorders that no one talks about. It happens everyday children all over the world are born with genetic disorders or syndromes and the lack of awareness and education can be the difference between life or death for these children. Had I listened to the doctors who diagnosed my daughter she would not be here today. Her pediatrician reminds me every time I feel like I’m not doing enough. But not all parents are able to cope the same especially when the doctors who virtually know nothing are giving you no hope for your child. It’s time to speak up!

I was asked to join the 5p- design team for the newly created store at www.cafepress.com/5pshop where you can purchase support and awareness merchandise. I am very happy to be part of such a wonderful and dedicated team. I am loving it!

We are still looking for representatives of other countries. If you would like to help all of us spread awareness please contact the 5p- Society here  director@fivepminus.org.. We know you are out there, join us!!!  Let’s stand together all over the world.

****************Press Release

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.

Sincerely,

The 5p- Society

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One thought on “We exist!

  1. Pingback: 2012 Recap « Life's Unexpected Blessings

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