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CdLS AWARENESS CAMPAIGN
May 10th is Cornelia de Lange Syndrome Awareness Day
Click Here for publications from CdLS Foundation
: Blog to Raise Awareness Campaign :
It's my hope that, this campaign is well received and frequently posted!
Post this Campaign Message to Your Site (details below)
The 'Blog to Raise Awareness of CdLS Campaign'
originated at my PC & Web Help 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 developemental abnormalities.
- 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.
More Information can be found at the following sites:
National Organization For Rare Disorders
Genetic Home Reference
Special Child: Disorder Zone Archives
Ask the Geneticist
Google Search> Cornelia de 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 "2007 Conference Highlights" Video
[http://www.cdlsusa.org/movie/CDLS_CHICAGO_256k.mov]
Research Book
Cornelia De Syndrome: A Medical Dictionary, Bibliography, And Annotated Research Guide To Internet References
(Paperback)
Why did I post this?
I am the grandparent of a CdLS child hoping to raise awareness of this rare disorder and in turn, bring much needed support to the affected families.
The Blog to Raise Awareness of CdLS Campaign
and this post are dedicated to my granddaughter:
AVERY VICTORIA
Born May 9, 2007
(open to all)
LINK-UP to this page.
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Submit a to comment this blog post (guidelines) with a link back to your 'CdLS Awareness' post. Once submitted, I will feature your blog, site or profile on URLAGE Blog (terms) or this page, with a one paragraph post (option: your text). You may use this posts' or pages' content (get campaign code or free custom matching), create your own (encouraged) or visit CdLS Foundation for publications. That's it, start posting!
Get a Banner for Your Blog, Site 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.
-Display a banner 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
-Preview all banners and get the html code
(Direct link, IM or Email and [IMG]/Forum):
http://s47.photobucket.com/albums/f151/z007/CdLSbanners/
: Banner Show :
(click any banner to get html code)
If you have CdLS or are a family member or caretaker, and would like to be included in this campaigns' post, I would love to post your story (option: your text) and a link to your blog, site, profile, or other (photo, artwork, ...) Contact me!
Disclaimer:
I (and URLAGE Blog) am not affiliated with or employed by CdLS Foundation or their affiliates, nor am I a relative, friend or friend-of-a-friend affiliated with or employed by the CdLS Foundation. This URLAGE Blog post does not 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 blog reader. I (and URLAGE Blog) have not and will not financially gain from this post or campaign.
Some content on this page is Copyright fanzi0© 2008 All rights reserved.
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