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CORNELIA DE LANGE SYNDROME AWARENESS PROJECT


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A publication of the Cornelia De Lange Syndrome FoundationClick here for all material from the CDLS Foundation.

Show Your Support - Style Your FirefoxCDLS Awareness Firefox Personaby DELADE DESIGN - http://deladedesign.blogspot.com/
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Post this Campaign Message to Your Site - Blog - Forum - Profile

Get Involved!(details below)This CDLS Awareness Project originated at my blog:http://blog.urlage.com/2008/02/blog-to-raise-awareness-of-cdls.html



What is Cornelia De Lange Syndrome?
Cornelia De Lange Syndrome also known as CDLS, is a little known and rare genetic disorder resulting in severe developmental abnormalities.
 
CDLS Quick Facts
CDLS is a genetic syndrome present from birth. There is no cure.
CDLS occurs in approximately 1 in 10,000 live births. It affects males and females equally, and is seen in all races.
The severity of CDLS ranges from mild to severe, but all individuals with CDLS share similar characteristics, such as small stature, hands, feet, and head; joined eyebrows; long eyelashes; upturned nose; and thin, down-turned lips. Physical and cognitive development is delayed. Self-injurious behavior is common, and between 60-70% display some degree of autism spectrum disorder. Speech and language are delayed or absent. Limb differences and/or missing limbs occur in 25% of cases. Common medical problems include gastroesophageal reflux disease, bowel abnormalities, heart defects, seizures, and cleft palate.
Since 2004, changes in three different genes have been identified as causing CDLS. These genes are NIPBL on chromosome 5; SMC1A on the X chromosome; and SMC3 on chromosome 10. Changes in the latter two genes seem to correlate with a milder form of the syndrome.
In 99% of cases, the gene change that causes CDLS is sporadic, not inherited, which means the change occurs randomly during conception.
Researchers estimate there are 20,000 individuals in the U.S. who have CDLS but live without diagnosis and/or support services.
Resources
- National Organization For Rare Disorders
- Genetic Home Reference

- Special Child: Disorder Zone Archives
- Ask the Geneticist
- Google Search - Lange Syndrome
- CDLS USA Foundation Blog
- CDLS World
- Watch the Find One Child Video or order the DVD [http://www.cdlsusa.org/video/index.shtml]

- Watch the CDLS USA Conference Highlight Video [http://www.cdlsusa.org/video/index.shtml]
- Book: Cornelia De Lange Syndrome - A Bibliography and Dictionary for Physicians, Patients, and Genome Researchers by Philip M. ParkerSupport 

Give to Support the CDLS USA Foundation http://www.cdlsusa.org/give/index.shtml
Shop at iGive.com to support CDLS Foundation  

Click to join Yahoo Group CDLS-kids

Why did I post this?
As the grandparent of a child with Cornelia De Lange Syndrome, I hope to raise awareness of this rare disorder and in turn, bring much needed support to the affected children and their families.

This awareness campaign is dedicated to my granddaughter:
AVERY VICTORIABorn in May 2007

Get Involved(open to all)
Submit a comment to this post with a link back to your CDLS Awareness post or message (for optional networking). Once submitted, I will feature your blog, site, forum or profile message on the CDLS Friends page (terms) with a one paragraph post (option: your text). You may use this posts' content (campaign code), create your own (encouraged) or visit the CDLS Foundation for publications. That's it, need a banner?http://www.urlage.com/cdls/banners
Option 1:
Get a banner for your site, blog, forum or profile.
-Choose from over 35 pre-made banners with the html code for hot linking.
-No limit, use as many banners as you need - put one on all of your blogs, sites, forums, profiles, etc.
-All banners and the html code listed as a spreadsheet:http://spreadsheets.google.com/pub?key=prU6bFXfPZZqBA6bAUzofGg&output=xls
[http://spreadsheets.google.com/pub?key=prU6bFXfPZZqBA6bAUzofGg&output=xls]

-Preview all banners and get the html code (Direct link, IM or Email and Forum):http://www.urlage.com/cdls/banners
[http://www.urlage.com/cdls/banners
]
-Banner Slideshow: (click any banner for the html code)

Option 2: 
Copy and paste the campaign message 'text' to post on your site, blog, forum or profile (any family-friendly site).

Option 3:
Create and host your own 'awareness graphics' or 'text message' to join the campaign.
Option 4: Link to this page:
<a href="http://www.urlage.com/cdls" title="URLAGE » CDLS Awareness Project">URLAGE » Cornelia De Lange Syndrome Awareness Project</a>Free scripts provided by The JavaScript Source

Note: If text is highlighted, then it has been copied.
- If your clipboard is available, the code should be automatically copied after pressing the Copy button.
- If not, press the Copy button to select code (or manually select the code) then, R click, next L click Copy or press both the Ctrl and C keys on the keyboard to copy.
- The code should be copied to your clipboard for easy pasting (Ctrl and V) to your site editor or save to a text editor.

- Contact me, if you need help with linking or the campaign code.

Watch the VIDEO TUTORIAL: Copy and Paste (blog post)
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Share Your Story
If you have CDLS or you are a family member or caregiver, and would like to be contacted about this project, please provide your contact information via this contact form.


Join the project, together we CAN make a difference!

Visit iGive.com

Disclaimer: Neither I nor this website, are affiliated with or employed by CDLS Foundation or their affiliates, nor am I a relative or friend affiliated with or employed by the CDLS Foundation. This website does not intend to suggest that the CDLS Foundation is affiliated with, approves of or sanctions this site, nor does it imply any association with the CDLS Foundations' owner, registered name, trademark name or holder (if applicable). All information contained here is for personal interest or information to the reader. Neither I nor this website seek or accept monetary (or any other type) gain from this project. Anyone wishing to donate funds for this awareness project should contact an appropriate non-profit corporation serving Cornelia De Lange Syndrome patients.


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