CORNELIA DE LANGE SYNDROME AWARENESS PROJECT

EMAIL: 

This CDLS Awareness Project originated at my blog:
http://blog.urlage.com/2008/02/blog-to-raise-awareness-of-cdls.html

Get Involved!
(details below)

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. Parker

Ways To Help

Support families in the NICU
https://www.marchofdimes.com/giving/support_nicu.html

Giving Opportunities at St Louis Children's Hospital
http://www.stlouischildrens.org/content/giving/default.htm

Children's Miracle Network (CMN) of Greater St. Louis
http://www.cmn-stl.org/

Donate to support the Cornelia De Lange Syndrome Foundation
https://donate.cdlsusa.org/

Shop iGive.com ... iGive donates a percentage of every purchase when you choose to support the Cornelia De Lange Syndrome Foundation.

Use iGive's free web search service to earn 1¢ for each search to support the Cornelia De Lange Syndrome Foundation.
http://isearch.igive.com/

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 VICTORIA
Born in May 2007

We Love Avery Morell Facebook Group
fb.me URL: http://on.fb.me/weloveavery

Get Involved

(open to all)

Please contact us to donate your time, services or expertise to this awareness project (ie: technical, media, hosting, etc).

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 New Banners! Sept 2011

Helpful Links

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 your site, blog, forum, profile, signature, etc.
-All banners on Photobucket with codes listed as a spreadsheet:
View Spreadsheet: http://spreadsheets.google.com/pub?key=prU6bFXfPZZqBA6bAUzofGg
Download Spreadsheet: cdls-banner-spreadsheet.xls
-Preview all banners and get the html code (Hot Linking Allowed):
http://www.urlage.com/cdls/banners
[http://www.urlage.com/cdls/banners ]

-Banners on Photobucket: (Hot Linking Allowed: Direct HTML/IMG, IM or Email and Forum)
http://www.photobucket.com/cdlsbanners

Banner Slideshow

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:

Select All
<a href="http://www.urlage.com/cdls" title="URLAGE » CDLS Awareness Project">URLAGE » Cornelia De Lange Syndrome Awareness Project</a>
Free scripts provided by DynamicDrive.com

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)

Share this tutorial:

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!

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