MAY 2010
CORNELIA DE LANGE SYNDROME AWARENESS
A publication of the CdLS Foundation
Click here for more material from CdLS Foundation.
Post this CAMPAIGN Message to Your Site
Visit the main campaign page:
http://www.urlage.com/cdls
(details below)
This 'Blog to Raise Awareness of CdLS Campaign' originated at:
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 - 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 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. Parker
: Ways to Help :
Give to Support the CdLS USA Foundation
http://www.cdlsusa.org/give/index.shtml
Shop at
iGive to support CdLS Foundation!
Click to join Yahoo Group cdls-kids
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.
This awareness campaign is dedicated to my Granddaughter
AVERY VICTORIA
Born May 9, 2007
(open to all)
Submit a comment to
this post with a link back to your 'CdLS Awareness' post or message. Once submitted, I will feature your blog, site, forum or profile message on this website (
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, let's raise awareness - start posting!
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 [IMG]/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 respectfully post online.
Option 3:
Create and host your own 'awareness graphics' or 'text message' to join the campaign.
: SHARE YOUR STORY :
If you have CdLS or you are a family member or caregiver, and would like to be included in this campaigns' post, I will post your story (option: your text) and a link to your blog, site, profile, or other (ie: photo, artwork, ...). Contact me!
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 will monetarily gain from this post.
Join the campaign, together we CAN make a difference!
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